Het gaat slechter. Toch wat te vieren!

Het gaat slechter.

Zoals vorige week al geschreven gaat het achteruit. Inmiddels is het zo ver achteruit gegaan dat ik ca 20 uur per dag op bed lig, zo vermoeid ben ik.Totaal geen energie meer. Wat een verschil met 4 weken geleden. Absoluut een tegenvaller. We dachten dat het alleen maar 

beter zou gaan, maar zo’n achteruitgang hadden we niet 
kunnen bedenken. Vorige week donderdag een mailtje naar de hematoloog gestuurd om advies. Hij geeft het afbouwen van de prednison als mogelijke oorzaak. Even aanzien of het beter gaat. Gisteren, na weer een dag op bed, nog een mailtje gestuurd. Ik zat op 5mg prednison. Op zijn advies (binnen een uur op zondagavond(!), wat een betrokken arts!) gaan we dit verhogen naar 10mg, en daar ben ik vandaag mee begonnen. 
Deze week gaan we nog naar het ziekenhuis om te praten over het verblijf op de IC. We zullen tegelijk bloed laten prikken zodat de hematoloog ook nog de bloedwaarden erbij kan pakken om te achterhalen wat er aan de hand is. Ik wil en kan gewoon niet nog een week wachten. Mijn eetlust is ook helemaal weg. Gelukkig was ik sinds thuiskomst 12 kg aangekomen, waarvan ik er nu weer 2 kwijt ben.

Een mijlpaal!
Helemaal in mijn vorige blog vergeten te schrijven. Ik heb een mijlpaal bereikt! Op 15 mei nieuwe stamcellen (en dus een kans op een nieuw leven) gekregen. Op 15 november heb ik het eerste half jaar gevierd! Het was een heel heftig half jaar. Paar keer bijna dood geweest, weer leren lopen, en nu weer een verslechtering. Denken regelmatig aan de woorden van de hematoloog “we zijn er nog niet”. 

Hieronder 3 foto’s. Eén genomen op 15 mei waarop ik het zakje stamcellen in mijn handen heb, eentje genomen op de IC nadat ik 4 weken kritiek heb gelegen en de laatste van eind oktober toen ik weer kon lopen. Achteraf gezien voelde ik me toen op zijn best. Maar we houden vol en kijken vol verwachting naar de toekomst.

977 gedachten over “Het gaat slechter. Toch wat te vieren!

  1. Bolívia, se sentindo injustiçada, vai processar a revista Veja.Devolvam primeiro a refinaria roubada da Petrobrás e o dinheiro do BNDES da Transcocalera.A Veja vai, isso sim, mandar mais umas reportagens .50 incendiárias bem nas fuças do índio vagabundo de araque e escroto.

  2. Pour la bonne copine, on ne s’est toujours pas vu en vrai.Par contre, à part deux qui ont eu une critique « sympa », on a ignoré mes critiques. Enfin bon ça prouve que c’était un massacre et que c’est peut-être moi qui était à côté de la plaque.

  3. Howdy! This blog post couldn’t be written any better! Looking at this post reminds me of my previous roommate! He continually kept preaching about this. I’ll send this post to him. Fairly certain he’ll have a good read. Many thanks for sharing!

  4. Il faut bien remarquer que l’indignation devrait en France se reporter plutôt sur les pratiques spéculatives des promoteurs, celles qui aboutissent à faire de Paris une ville inhabitable par la seule grâce de la spéculation reine. D’autres villes en Europe en souffrent, et d’autres encore ont su encadrer encore plus fortement ces dérives (Vienne). Il faut savoir sur quoi s’indigner amis internautes. C’est bien là le problème d’une société en mal de repère moraux.

  5. The author states that ‘but the UN can vote all it wants and it won’t get the Palestinians what they really want and need’. However, as the overwhelming majority of Palestinians (see numerous polls and evidence in Arabic)want precisely the elimination of Israel and the formation of a Palestinian state ‘from the river to the sea’, the UN vote, by increasing the demonization, isolation and diplomatic weakening of Israel will definitely contribute to what ‘the Palestinians want’…

  6. Wow, einen Podcast habt Ihr nun auch noch…Schade ist aber dass man nur kommentieren kann, wenn man bei MySpace eingeloggt ist (dazu muss man aber auch erstmal dort Mitglied sein),vielleicht könnt Ihr auf längere Sicht den Podcast einfach ins Blog einbinden?Grüße, Karin

  7. Jajaja…Me encanta el sarcasmo!!Rajoy va a tirar de los espanoles mientras se lo permita. Su compromiso es con los propietarios del dinero, y no porque le guste sino por cobardia. Y la realeza es una historia de miedoUn abrazo

  8. Looks very relaxing and luxurious!I do hope you write a post about what it’s like traveling in this part of Europe with Morran. Were you allowed to take her most places? What about hotels? And was any specific documentaiton required?

  9. Wow das sieht mal wieder total perfekt und lecker aus. Ich liebe Granatapfel und bin begeistert, dass diese Frucht gerade Saison hat, so ist sie gar nicht so teuer!Das mit den Fotos kenn ich, finde das auch anstrengend…GLG und schönes Wochenende!Charlotte

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  16. That looked like a perfect night out!The pub looks welcoming.. I love a good old pub! The curry looks delicious and the company looks fun!My mums current BF is a biker.. bald head, beard, tattoos, band t-shirts, leather jackets and multiple bikes.. bikers always seem so jolly and up for a laugh!I have never seen Pyf in anything but combats, band t-shirts and black hoodies.. he's very much a metal head.You and your friends look gorgeous!I really fancy a curry now! xxx

  17. 2012. I can’t believe it. This year flew by so quickly! I am joining in on the Pantry Challenge over at Good Cheap Eats. I have a lot of things in my pantry/freezer that i really need to start

  18. O Zeca acompanha-nos Sempre nas lutas e até no dia-a-dia, mas as tuas canções também.A música/canções são uma alavanca para mantermos a vontade de lutar!Bjs,GR

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  20. I hate the annotations as they are being abused. People are littering their videos with these stupid things, blocking the video.Now, sometimes they're going to be useful, but I would really like an ability to turn them off as I watch them. Just a radio button to instantly remove them all, or turn them back on again.In fact, it's just good policy to always have these new features you develop as opt-in, rather than compulsory viewing.

  21.  You must always remember that it is not important to spend so much money on your clothes. You should wear something in which you are comfortable and effortless.Well its a great shared blog man.Thanks a lot for sharing.Keep sharing as like this always.

  22. as usual google thinks they are god and as usual the good suffer from the bad. if i use my companies sitename in a comment it has some commercial value for sure, but on the other hand it is a fact that i state my comment with my business in mind. in other words i comment on thins that affect my business. do you mind if i use my companies name in that vase?

  23. Thank you Sam Get well soon out of the dental thing Sorry for the O2-UK thing, hope it ‘s fixed asapKeep it up and thanks again my favorite, decent, XDA TV

  24. the IST is doing as many pull-ups you can possibly do. and how many sit-ups in 2 minutes. then the Mile and 1/2 run as fast as you can..If youre male you fail if you don’t go faster than 13:30 and i think its 15:30 for femals…the times may be wrong..idk

  25. There is a house close to where we live in a "better' area. It's actually a ruin that was bombed during the second world war. I'm SO in-love with it that Every morning at 6am after I've dropped my husband off at the train station, I take a drive past it and dream…….*sigh*

  26. : f tare:)) auzi, apropo de asta, zi-mi si mie niste amine-uri tari asa..Ca tot vad amv-uri super pe yotuube dar nu stiu din ce sunt luate 😀 si mi-ar placea si mie sa le vad;;)

  27. The link you gave here gives a 404 error so I’m not sure if you have taken it down or mistyped the link. I’ll take a look, but I’ll need something to look at.

  28. That is so awesome! You totally deserve it. I sent a bunch of girls who just got engaged your way. I told them you were way to good to stay so affordable for very much longer. Congrats girl!

  29. No matzo for me, but those are some mouthwatering pictures. You can not eat too much salmon. I call it brain food. I just made a wonderful recipe the other day and I was eating salmon for every meal afterwards and loving it!Shirley

  30. those so called tu-tu skirts are nothing more than a very old “come back” from the 50′s and early 60′s. I wore them under my skirts and I am 65 now. I have seen them in stores from time to time for under $30. they are used for dance costumes and for square dance attire. I hope the other items will be in good moral taste for children to whom they are marketed. Grandma

  31. Hey Luciano!I must get Meerkat Mail, I don't have it. I'll review it in the future and maybe you can share some your students responses? I love Little Mouse's Book of Fears too, brilliant and so much to look at in the illustrations.Emily Gravett is a very special author illustrator. Sandie

  32. The guidelines you have given here are really useful. Rrt had been such an exciting surprise to see that awaiting me after i woke up this very day. They are often to the point as well as simple to grasp. Thank you for the thoughtful ideas you have shared above.

  33. I'm glad that the flagging system is more specific, however could you guys possibly implement an age blocker so that we can regulate the content of our own videos?For example… age blocks could be broken up into…* All Ages (this would be the default setting for all existing videos, unless they've been flagged)* Suitable for persons 12 and up* Suitable for persons 15 and up* Suitable for persons 18 and upThis could decrease the likelihood of videos being flagged, and at the same time shield young children from objectionable material.

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  35. Anonyymi voi tarkastaa Ollin Nutrix-kirjan, josta Noorakin on kirjoittanut. Suffer wellille taas Ollin omakohtainen kokemus ja vuosien tutkailu ei taida riittää empiiriseksi tiedoksi.Ollille terveisiä sen verran, että ihanaa kun joku jaksaa säteillä noin kirkasta valoa näinkin harmaana päivänä! Maailma kaipaa lisää onnellisia ihmisiä.

  36. is that Blacks MUST take matters into their own hands and clean up the mess instead of sitting around blaming systems, Whites or whatever."Let's forget the fact that there are black communities where parents are involved and demanding both schools and children are accountable.I live in one.What is your suggestion for inner city blacks taking matters into their own hands and cleaning up the "mess"?Considering that most of them are products of the dysfunctional system.

  37. Pour moi le printemps, c'est quand je mets mon collier perroquet que je ne met jamais l'hiver (j'en ai pas envie quand il fait froid), et que je peux marcher plus doucement dans la rue, en accord avec la douceur des températures, le tout en regardant éclore les jonquilles.

  38. uhm, mimo ine included aj nenutene potvrdenie starej pravdy..link na clanok putuje do icq okna jednej slecny, ktora zije vo svojich 28 rokoch v naivnej predstave, ze ked sa s nou chlap vyspi tak jedine a vysostne z dovodu toho, ze ju naozaj a zufalo miluje..amen

  39. In general, sophisticated libertarian concepts (such as, oh, "Just because the government legalizes it doesn't mean you should do it") don't work that well for minors with 2 digit IQs and heads full of THC."Life is tough. But, it's tougher when you're stupid." — (Apparently mis-)attributed to John Wayne

  40. · En même temps, est-ce vraiment nécessaire de lister tous les articles dans ta sidebar ? Ca risque de faire beaucoup à force non ?Désolé mais je n’ai pas d’idées pour faire de menu déroulant.Essaies des mots-clés tels que : links slider jquery etc.

  41. Nella foto in motoretta, sembra un camionista boscimano con un problema al petto :)Di "personaggi" del genere, se ne trovano un po' anche in via Ormea a Torino.E comunque i gusti son gusti e nessuno può (nessuno deve) metterci il dito 🙂

  42. I’ve noted my reasons for Obama’s “bump” elsewhere. If he tracks to the middle & the economy improves measurably & no other significant events trip him up He Is Likely to Get Re-Elected.The reason he’s moved towards the center is the most recent butt whipping he took (see Election 2010).He’s even started to reassemble some retreads from the Clinton administration and brought in a business friendly chief of staff.It would be helpful if people started reading the papers and not just the polls.

  43. Great job on your review. See a lot of reviews going back to 2008 that trash MagicJack. Can’t help but wonder how the technology is doing years later.Totally get the point that if you own outdated crap computer then that alone is gonna ensure a bad experience.Verizon is happy to charge either .47 cents/min over my 450 mins or $20/mo more to got to 900 mins. Just looking for a better cost option.

  44. Thanks a ton for your post. I would like to say that the cost of car insurance will vary from one policy to another, for the reason that there are so many different issues which play a role in the overall cost. By way of example, the brand name of the vehicle will have a significant bearing on the price. A reliable aged family automobile will have a less expensive premium when compared to a flashy sports car.

  45. Dear Carole, I just want to say I am in love with your blog!!!I am from Peru but I lived and worked 4 years in London and you have no idea how much I am missing all the cute stores, the markets, tea houses, everything. I am also an interior designer. I worked for Tessa Kennedy Design. I am forwarding her your blog. I am sure she will love it as much as I do.Best of lucks,Isday

  46. OMG! Kate, what a wonderful offer!! Thank you! I have no problem with people who breed responsibly and have a plan. It sounds like you do your share of giving back as well and to top it off, I LOVE Standardbreds. They are such wonderful horses.

  47. wonderful, you've managed to articulate an odd feeling I've had about the whole Rookie phenomenon that I haven't being able to put my finger on… whilst trying to encourage 'be yourself, be awkward, love yourself!' ideas they are also setting a specific aesthetic and taste that is really, really acute… also, feminism for 'fashion's sake'? no no. Isobel, you're MY demigod 😉

  48. Irina Nagy Gyuris / 24/12/2012Frumos.In general imi plac Time-lapsurile.Dar eu totusi prefer o fotografie cu un brad sau de exemplu cu natura de iarna pt felicitari de Craciun.Fiindca este mai festiv decat un clip cu accelaratia vietii in orase mari.Ce sa faci,gusturile sunt diferite. Multumim pentru urari,si va doresc si eu,pentru toti membri clubului foto un Craciun fericit si un an nou mai bogat,ca acesta a fost.LA MULTI ANI,2013!Reply

  49. congratulations Admins, my dearest families…….i’m so happy today because since several days ago there are so many good news about our boys…..thank you once again to JYJ3 for working hard till now to give an update everyday to us and it’s so amazing to knew that we reached 10 millions hits for only 8 months…….!!!!!

  50. To the idiots going on about Beyonce’s videos: would you like to know why people insist she’s falling off? Because she’s becoming more and more desparate, going all the way out to sell like she did during B’Day, the critically panned album. That Beyonce’s songs HAVE to be video-driven is an insult. She HAS to make these videos and sell them… Lil Wayne didn’t. That’s the difference.

  51. halil dalgıç diyor ki:merhaba ben halil dalgıç 31 yaşındayım bekarım yurtdışı engelim yok gurbette çalışmaya müsaitim ve alışıgım afganistan kandaharda escort olarak çalıştım iyi derece ingilizcem var ayrıca elektrik ve gazaltı kaynagı ve montaj meslegim var siznle çalışmaktan gurur duyarım saggılarla teefon numaram 05427487548

  52. Hey there! I’m at work browsing your blog from my new iphone 3gs! Just wanted to say I love reading through your blog and look forward to all your posts! Keep up the superb work!

  53. Angel,Tu só tens uma perfeita audição (invejinha! rsrsrs)O mundo hoje é sonoro demais, gritante e barulhento demais. Se alguém como eu já fica irritada com tanto barulho que me deixa zonza, imagina alguém com a audição 100%!!Tem dias q eu tb fico #surtadamodeON por captar sons demais!Beijo giga!

  54. Olá. Queria colocar uma dúvida. A pílula e o preservativo, usados em conjunto são um método completamente eficaz? Já tomo a pílula à um ano e queria iniciar a minha vida sexual mas mesmo utilizando esses dois métodos tenho medo que originem uma gravidez indesejada. E a pílula usado sozinha sem preservativo também é eficaz? Aguardo uma resposta.

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  56. Really I’m just commenting BECAUSE I CAN now… I didn’t have a Maurice Sendak childhood (though he is totally and unquestionably admirable, he just doesn’t touch me in that special childhood way — funny that)Ruby is sooo cute — yay for more girls for the Girls’ Club!! Congrats to all involved.see ya soon,Kate C

  57. Help with science lab… Relieving stomach acid reflux?So we are comparing two different products and using HCL but I’m not exactly sure how to do it. The HCL is the stomach acid right? and then testing the PH when we mix with the product, but would we want it to be higher or lower PH? Do we have to do it at the same time? Please help I’m really confused I didn’t understand what my teacher was saying that much and I’m having a hard time with people trying to explain it to me.

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  59. Mä luulen, että miehet kuvittelevat, että iso kalu olisi jotenkin autuaaksi tekevä taikakalu, joka saisi naiset hekumaan. Valitettavasti täytyy sanoa, että ei ole. Oleellisinta on saada nainen oikeaan mielentilaan ja halukkaaksi. Kalun massa ei korvaa seksin laatua, siksi naisetkin suosivat pienempiä dildoja. Elikä miesten pitää panostaa naisen esileikkeihin, etukäteiseen hyvänäpitoon, suukeksiin, etc, jos aikoo saada naisellensa tuotettua nautintoa. Pelkästä kalun suuresta koosta ei ole kuin haittaa, ilman em. juttuja.

  60. 1. we can use as a toy by making plastic/wooden/thermocol bricks and each hole of brick having a wheel supported by a straight wooden/metal stick.2. we can use different sized colourful bricks in interior design.3. we can use as a bed for kids by providing support in hole to prevent the kid from fallen during sleeping and make it from cushion material.VA:F [1.9.10_1130]please wait…(1 vote cast)

  61. Il est heureux que les consommateurs soient de moins en moins des pigeons. Qu’ils comparent avant d’acheter, achètent moins compulsivement. Se renseignent. Un espoir que le marketing et la publicité, c’est deux variantes légales de l’escroquerie, aient un peu moins d’impact.

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  63. Lawrence Ellison is a model for me. He was raised by his aunt and uncle. Even he grew up without his mother and father he became one of the top 10 richest people 2011. He truly deserves our respect. I’m happy for him and with his success. I hope he will become the number 1 top 10 richest people.

  64. rally tonight in sparta. this is from an email“The “theme” is “Say yes to our children by saying no to> Christie’s budget.” Could you spread the word? We need as many people as> possible there because we really need to get our legislators to rework> these budget cuts so our children aren’t suffering.”

  65. Wow. This is exactly why you should be a blogger/writer. That was so well put, and your words flowed effortlessly. I can definitely relate to your preoccupations…it's almost inevitable when coming into the blogworld without having experienced it before. We all have that initial doubt, but I agree, blogging for YOU, not to gain readership and fame, is a great route.Props, my dear!

  66. Bon retour chez toi ! (je compatis, moi j’ai eu une inondation dans ma cuisine..). Bizarrement, j’ai toujours adoré la rentrée ^^ Je sais pas, y a une sorte d’excitation qui va avec. L’impression qu’on a une nouvelle page blanche a écrire, l’énergie de mettre en place des projets etc.. D’ailleurs, si j’y repense, les grands tournants de ma vie, je les ai pris en septembre (les décisions tout du moins !). Bon lundi !

  67. Hola Amparo,Mi corazón se enternece y alegra con lo que me escribes. Con respecto al material, estoy trabajando asiduamente traduciendo las creaciones de Colin Tipping con su permiso, y progresivamente iré anunciando lo que se vuelve disponible a través del boletín. Paciencia porque hay mucho y muy buen material y traducirlo toma su tiempo y su volumen de cariño también.De todas maneras te recomiendo aprovechar cualquier oportunidad de tener la vivencia del Perdón Radical con alguno de los eventos que vamos organizando.Un fuerte abrazo,Lola

  68. akp5401 – you have to cut them in the transverse plane – that is, horizontally (with the stem side uppermost)Most people slice tomatoes in the coronal and sagittal planes (ie. vertically down from the stem)

  69. Those are the most incredible leather pants I have ever seen!!! You look amazing and you've styled them perfectly – love the bandeau top under the sheer – utterly, utterly gorgeous sweetie!! xo

  70. Posted on buenos dias acabo de enterarme de tu blog y la verdad es que me parece genial no sabia de mas personas interesadas en estos temas, aqui tienes un nuevo lector que seguira visitandote a diario.

  71. Thank you to all who have commented in support or suggestion…I had a blood test recently and the only items of interest where that my LDL’s were still elevated and that my creatinine levels were on the high side of normal. Exciting stuff eh? 8)I will say in terms of over the counter supplements that I just cycled off of Vitamin Shoppe’s Tribulus a couple weeks ago. So there would be more Luteinizing Hormone for natural TEST production. I also supplement DHEA due to age… Other than this it is vitamins, minerals and lotsa protein…

  72. Hi Margareth, oven temp is very important with macarons – I just made some today and the oven had been turned off when I had not realized, even though I turned it straight back on they turned out cracked and with no foot – so yes I think your oven temp is the issue. Try 160 and if that does not work try a friends oven. It seems unusual to me the the oven would not go lower – it is not in degrees F is it? I am guessing not as you still managed to bake them and at 160 F they would not bake.

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  74. Mari disse:Mestre Elaine, estou participando do projeto do curso de engenharia de produção civil que iremos entregar no começo do periodo no IFAM, Se a senhora ler esta menssagem peço gentilmente que entre enconta com a gente para tar uam conferida com que estamos fazendo.Este é o nosso email

  75. I have arrived as the next best super duper cookbok gathering dustfranky..wheres the rumspringa? and forget the glass, I need a box, I'm thirsty, and no u can't have any, we're on the air!

  76. Article à conserver précieusement. Il sera un objet d’étude intéressant d’ici quelques années, sur la manière dont pouvait raisonner un juge de la fin du XXe siècle.Ce sera une mine pour les historiens (et les humoristes), au même titre que :- les considérants de certaines décisions de « justice » rendues en vertu du code noir,- les livres d’éducation pour jeunes filles de la fin du XIXe siècle et leur vision de la place et des capacités naturelles de la femme…

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