En dan is het zo maar weer eind mei 2013.
SLECHT MAAR STABIEL.
Het beste nieuws is dat mijn bloedwaarden weliswaar nog steeds slecht, maar nog wel steeds stabiel zijn. Volgens de hematoloog nog steeds onverklaarbaar. Iedere 2 a 3 maanden ga ik voor controle naar het UMCU. Half uurtje voor de afspraak bloedprikken en dan direct in het gesprek met de hematoloog de uitslag bespreken.
Laatste controle was begin april. De waarden waren toen :
- Hb. 6.5 (energie, moet tussen de 8,5 en 11,5 zijn)
- Bloedplaatjes 115 (stolling, moet tussen de 150 en 400 zijn)
- Witte bloedlichaampjes 4.2 (weerstand, moet tussen de 4 en 10 zijn).
Het zal iedereen wel duidelijk zijn dat deze bezoeken toch spannend zijn. Zakken de waarden te ver dan moet ik een stamceltransplantatie ondergaan. Verder is er een groep myelofibrose (MF) patienten waarbij de MF overgaat in acute leukemie (ca 10%). Dit kunnen ze ook bij deze controles constateren. Mijn Hb is nu al ruim een jaar constant rond de 6.5. De bloedplaatjes zakken langzaam (45 gezakt in 1,5 jaar). Opvallend is wel dat mijn weerstand bij de laatste controle is toegenomen. Ik verwacht dat het incidenteel is geweest omdat ik toen ook verkouden was. Medio juni weer een afspraak en dan maar kijken hoe de waarden dan zijn.
Ondertussen ben ik bezig met het (nadenken over het) invullen van de dagen, en met het doen van de dingen die ik nog wel kan. Gelukkig kan ik nog meer wel dan niet. Met afstand is het gebrek aan energie het grootste probleem dat ik ondervind. Iedere dag sta ik al heel moe op en dat is bepalend voor de invulling van de dag. Heel erg weinig energie. Ik heb me dan ook voorgenomen om geen enkele verplichting aan te gaan op vaste tijdstippen of vaste dagen, gewoon omdat ik niet weet hoe ik me dan voel. Het varieert nl. tussen moe en heel moe. Als ik afspraken maak dan is dat er 1 op een dag en doe ik er voor en erna niets. Vaak ook de dag ervoor of erna niets, alleen om energie te tanken.
Wel heb ik me opgegeven als vrijwilliger voor de MPN stichting. Deze stichting ( http://www.mpd-stichting.nl/ ) komt op voor de belangen van Myelofibrose, PV en ET patiënten. De afgelopen maanden heb ik daarvoor 2 maal een voorlichtingsmiddag voor patiëntenverenigingen bezocht bij ontwikkelaars van medicijnen. Via dit blog hebben enkele lotgenoten contact met me gezocht. Het is nuttig om met elkaar allerlei zaken, zoals financiën, UWV, verkorte IVA, maar ook stamceltransplantatie, bloedwaarden en MF, te bespreken. Het is fijn om iemand te helpen die “mijn traject” nog moet lopen. Aan de andere kant is het voor mij fijn om te leren van anderen. Dit laatste doe ik ook via een gesloten Facebook groep waarin 15 MPN patiënten lief en leed met elkaar delen. Leerzaam en gezellig.
Afgelopen donderdag voor het eerst sinds mijn afscheid naar mijn “oude werk” geweest in Leiden. Het was leuk om weer even terug te zijn. Heerlijk bijgekletst, maar ook fijn om te zien dat het goed gaat met het bedrijf en dat de mensen met plezier werken aan het verbeteren van de communicatie in de zorg. Natuurlijk doet het pijn dat ik daar geen rol meer in kan spelen, maar ja, het is niet anders. Ziek worden heeft niemand in de hand. Ik zou nog wel willen, maar het gaat gewoon niet door vermoeidheid en gebrek aan concentratie.
STAMCELTRANSPLANTATIE.
De hematoloog heeft aangegeven dat hij verwacht dat ik in de toekomst toch niet ontkom aan een stamceltransplantatie. Zoals al eerder in dit blog beschreven is, dat een hele zware behandeling met een hoog risico (30% op overlijden). Daar komt nog bij dat ook na deze behandeling de kans op complicaties groot is. Een revalidatie van één tot enkele jaren ligt dan ook in het verschiet.
Dit is voor Marjolein en mij de reden geweest om nu, versneld, dingen te gaan ondernemen die we nog kunnen. Uiteraard zijn het geen moeilijke zaken waar ik veel energie voor nodig heb. Nee, we worden zeker handig in wat wel en niet kan.
FIETSEN.
Het weer zit deze lente tegen, maar we fietsen toch erg graag. Jammer genoeg gaat dat bij mij niet meer op mijn gewone fiets. Te zwaar. Maar gelukkig kunnen we af en toe met de elektrische fietsen weg en dan genieten we daar enorm van.
CRUISE.
In februari heb ik een paar hele moeilijke weken gehad. Van bed naar de bank en terug. Kon gewoon niets anders meer. Enge hiervan is dat je niet weet waardoor het komt, of het tijdelijk is, of dat het een aanloop is naar de stamceltransplantatie. Dit was voor ons wel een reden om op korte termijn een cruise te boeken.
Medio april hebben we deze prachtige cruise gemaakt door de Caribbean. Het samen maken van een cruise stond heel hoog op mijn wensen lijstje omdat ik 32 jaar geleden een jaar lang op het Stoomschip de Rotterdam als bemanningslid de wereld (en vaak in de Caribbean) heb rondgevaren. Het was een fantastische vakantie. Heel goede hygiëne (erg belangrijk ivm mijn lage weerstand), maar alles is op zo’n schip dichtbij. Voldoende liften, en binnen 2-3 minuten ben je bij het zwembad of restaurant. Eigen hut met douche en WC. Ook op de plaatsen waar we de wal op zijn gegaan hebben we niet veel hoeven lopen door het gebruik van taxi’s of bussen. Kortom, we hebben echt genoten!Zoals jullie hebben kunnen lezen, maken we het er het beste van, natuurlijk met ups en downs, maar vrijwel altijd met een positieve insteek.
A perfect wholesome breakfast what more can I say! I think it would also make for an interesting bread pudding, but the problem is there would be nothing left over to make it with! This bread would last a day and half in my kietuen!Btahciful Angie!PSAngie can you recommend some really good kitchen shops in Germany? I bought some nice cooking implements in Cologne a few years ago and will be back this summer possibly.
That’s a clever answer to a tricky question
i heard the NAR commercial last night on the radio hyping realestate saying hthat homes double in vale every 10 years and that its a great investment blah blah blah and then they gave a website “with the fact”
There is a critical shortage of informative articles like this.
That’s really thinking of the highest order
To Fabrizio:Practitioners do the job of locating “holes” by attempting to exploit them to the benefit of their clients. However, they have no power to fill them – that’s up to the governments once these holes have been brought to their attention. Problem is, most hole-filling exercises involved about 5 times more concrete than is necessary and lots of overspill covering the good law. Practitioners then complain about the damage done by the hole-filling. This of course leads others to accuse the practitioners of defending the hole when they were only complaining about the collateral damage.Basically, we can’t win…
Clear, informative, simple. Could I send you some e-hugs?
That’s a posting full of insight!
I was struck by the honesty of your posting
Arf :/. Je suis désolée pour l’APN… M’enfin l’important est d’avoir pu garder les yeux ouverts devant tant de beauté .
Now I feel stupid. That’s cleared it up for me
Hi Nuala, great blog. I am torn between Lorrie Moore and Anne Enright but if I really had to choose it would be Anne. 'Little Sister' is one of my favourite stories.
It’s a pleasure to find such rationality in an answer. Welcome to the debate.
Good to see a talent at work. I can’t match that.
In the complicated world we live in, it’s good to find simple solutions.
Multumesc tuturor pentru comentarii in Numele lui Nickro, sunt sigura ca s-a bucurat de ele, sa stiti ca si eu visez sa le vad intr-o zi si il invidiez asa un pic ca el merge azi maine acolo, dar in acelasi timp astept impresiile lui de vacanta care cu siguranta ma vor convinge sa pun bani deoparte pentru Coasta de Azur! :))
Excellent suggestion, Fitz.For the record I have added an “educational” tag to this posts and to the five posts that appear in the “VIX – Educational Posts” section of the blog in the right hand column. I have also decided to unveil a new “volatility” tage that I will try to use sparingly, but should incorporate this series in full.As an aside, I always like to get input from those who have an interest in epistemology.Cheers,-Bill
I actually don’t know if it was Phil or Adam that severely criticized (“trashedâ€) Avneri for his stand opposing academic and cultural BDS.So you’re an overt liar and your abusing your relationship with YOUR SUPPOSED FRIEND to libel and misrepresent his position.And for some mystifying reason, you’re allowed to do that. Blatantly, openly and repeatedly, without the same sort of filter the rest of us labor under.
I have had no luck in London and the surrounding area suggesting that a quilt can be fine art. Art experts here insist textiles are not and cannot be fine art. If I want to show my work it has to be quilt shows, with all the problems that entails. However it does provide great advertising for all the quilting service I offer.
Very cool. I know the original line-up isn't there, but Billy and Jimmy are the ones responsible for the SP "sound" (Jimmy's drumming is the unmistakable). -Matthew Cepican A&R Vesuvius Records
Jesse offers a great service at a reasonable price. Every time we have used his services,he goes above and beyond to make sure that we have exactly what we need!
This is exactly what I was looking for. Thanks for writing!
Holy Toledo, so glad I clicked on this site first!
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I will always think of you when it comes to an increase in vanilla extract! I love vanilla, too – such a great flavor. The cupcakes look really tasty, and it really is such a shame you had to make another batch, due to an excess of frosting. I’m sure it was hard to find someone to eat them!
It’s a real pleasure to find someone who can think like that
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Talita Karolyne / merecedores dessa consagração e cada dia mais abençoados . Preparando homens e mulheres de Deus iluminados . #TribodeRúbem .
This piece was cogent, well-written, and pithy.
muchas gracias sonia,la verdad que me ayuda bastante voy a mirarla ahora mismo.El Holandes lo aprendere con la host family que me voy asiq ue acabare loca de la cabeza con los dos idiomas jajajjaja. Gracias por lo que haces por todos los que queremos irnos a Holanda,es genial¡¡¡ Besos
Impatience is my biggest weakness. I am so impatient that it leads to a lot of mistakes and rushed decisions such as impulsive shopping and then buyers remorse, closing my blog and re-opening it and so on. If I ‘d just had a little bit more patience a lot of things would be so much easier. I am working on it though!
Twickenham hasn’t been officially mentioned because I imagine the FA and RFU are still in talks.The RFU want to use Wembley, Emirates, Old Trafford and Anfield for their 2015 Rugby World Cup bid so I imagine the natural trade-off will be allowing Twickenham to be used for the FIFA World Cup bid.
Kick the tires and light the fires, problem officially solved!
I was really confused, and this answered all my questions.
Taking the overview, this post hits the spot
/ Ja, fürs Ende hätten die Grisly Manor Macher sich was interessanteres einfallen lassen können. Aber wie es heißt: der Weg ist das Ziel.
I love the strange pictures idea. When I get a phone that does more than do that archaic thing (calling?), I’ll be sure to do that. By the way, Fubar rocks. I’m going to say that to you all the time, now. Maybe I should call you Sister Fubar.
Thanks for taking the time to post. It’s lifted the level of debate
Super jazzed about getting that know-how.
What a joy to find such clear thinking. Thanks for posting!
Great thinking! That really breaks the mold!
Hey, that post leaves me feeling foolish. Kudos to you!
This “free sharing” of information seems too good to be true. Like communism.
A rolling stone is worth two in the bush, thanks to this article.
Stay with this guys, you’re helping a lot of people.
You could try getting the generic form. There isn’t anything like the benzodiazepines, over the counter but you can buy otc meds to make you drowsy that supposedly help with sleep. One of them is called unisom.
Reading this makes my decisions easier than taking candy from a baby.
working is no pic nic, matters not where. Poles are and will be coming back when they are paid to come back. If one more person in Poland offers me 15 złoty per hour to bust my butt building his big fancy roof, I think I may move to Norway.
Super informative writing; keep it up.
If you don’t like math then this is the best DED route you can take. Grasswick does an amazing job to teaching the material in straightforward manner. If you aren’t mathmatically inclined I would suggest taking this course with her as she structures to to cater to people who don’t naturally pick up the material. She’s also just an awesome prof. For Philosphy Majors: the course is interesting and focuses on a completely different branch of philosophy, which can help you strengthen your own arguments and critiques.
Er klingt aber auch recht anstrengend 😀 Gut, dass Marc auch alles in die Spülmaschine steckt – und seine Wäsche selbst macht. Auf sowas hätte ich auch in einer gemeinsamen Wohnung keine Lust, muss alles gerecht verteilt sein 😉
Taking the overview, this post is first class
Thought it wouldn’t to give it a shot. I was right.
In what world is it reasonable to be at war with 5 countries?I would say if that is your reasoning, you are a fool. And that includes Obama and George W. Bush. McCain is an idiot for believing in neoconservativism and empire. It is economically unsustainable, and immoral to boot.
Già . Io non so dire di un libro che sia il mio preferito, perchè mi sembra di sminuire tutti gli altri che amo, ma di sicuro è tra quelli che rileggo sempre con piacere!
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Ironiskt nog är låten från början skriven av Gaisarna i Hästpojken. Då med titeln "Utan personlig insats". Joels text däremot är ju bra mycket bättre! God Jul
Keep on writing and chugging away!
Jeg er misunnelig, Christine!! For et rÃ¥flott rom Celine har fÃ¥tt, det var virkelig nydelig altsÃ¥. Glad jeg kan drømme meg bort i huset ditt 😉 Klem Hege
The very crux of your writing whilst appearing reasonable originally, did not work well with me after some time. Someplace within the paragraphs you were able to make me a believer unfortunately just for a while. I still have a problem with your leaps in assumptions and you would do well to help fill in all those breaks. In the event that you can accomplish that, I would surely be fascinated.
Calling all cars, calling all cars, we’re ready to make a deal.
they felt no moral sense of moral obligation to their clients and were laughing with one another about how absurd and incomprehensible some of the financial products were that they were selling. Sad. Yes, wealth and prosperity are not one and the same.Value seeing you here!
wah keren banget.tapi saya jadi curiga, ini bener-bener blog yang dijadikan film, atau sengaja sebagai strategi pemasaran aja?kalo bener-bener blog yang dijadikan film kayaknya kok terlalu cepat prosesnya mulai blog itu ditulis september dan oktober, lalu november sudah selesai produksinya.tapi kalo ini betulan, wow cepet banget.. Budiono selesai posting Bikin Akta Kelahiran di Surabaya
Ma uitam acum pe net de curiozitate si chiar am gasit cateva poze in care seamana foarte bine Melania Medeleanu cu ea. Ce coincidenta, cu ocazia asta am aflat ca sunt nascuta in aceeasi zi si luna cu Melania, iar ultimele cifre ale anului 78 sunt inversul anului meu. Daca tot comentasem de Gwyneth. 🙂
Im Idealfall (da bin ich voll bei Markus, es geht noch viel mehr) gibt es auch in der Mail an die Blogger einen Knopf für eine einfache Antwort, Filterkriterien und noch viel mehr.
I am forever indebted to you for this information.
Thanks for your thoughts. It’s helped me a lot.
Jonathan Safran Foer– his writing style is unique and powerful, his characters are unforgettable, and he expresses emotion without ever being trite or overly sentimental. Extremely Loud and Incredibly Close is one of the only novels I've ever read multiple times.
And just in time to illustrate my comment on the efficiency of ethnic bloc voting and payoffs to their leaders, from New York. The "Orthodox Jews" referred to in the article are fundamentalist Jews who vote as ordered by their rabbis.Particularly interesting is the first comment, by an Israeli Jew, a secular, doubtless, who is angry and wants all New Yorkers to know that fundamentalist Jews run the same crooked scams in Israel that they do In New York City, Rockland County, New York, and (also just today).
Clear, informative, simple. Could I send you some e-hugs?
Time to face the music armed with this great information.
That hits the target dead center! Great answer!
Most help articles on the web are inaccurate or incoherent. Not this!
Great insight! That’s the answer we’ve been looking for.
What a wonderful example…this world learning how to be in the next. I know I’m not ready but I hope I’m getting better at it. Sort of like learning to walk or ride a bike…it doesn’t generally come out perfectly the first time. God, be patient with me. Amen.
Your answer was just what I needed. It’s made my day!
Big help, big help. And superlative news of course.
…ich vertraue weiterhin den eigenen Wartungsfähigkeiten von OSX. Bevor ich etwas in meinem System zerstöre, sei es durch irgendwelche Wartungs-Tools oder durch meine Unwissenheit im Umgang mit ihnen, lasse ich es lieber. Bin halt ein kleiner Schisser…
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That’s way the bestest answer so far!
Oooh, I'm loving the new Beetle! We sold our 1972 Cherry red baby a couple of years ago when we were broke and I really miss it! I love the scarf too. Thank you for the ebay tips. I'll try them out. I have been known to get a good bargain when people have misspelt the item title too. xxx
daya comentou em 18 de agosto de 2011 às 03:11. oii julia,adorei o look,tava esperando esse ,hehe…so queria te perguntar uma coisa..tem algum cilios postiços nacionais q sejam bons?algum deliniador em gel nacional?bjoooo
Como siempre se agradece la risoterapia… y mucho! Pero la sonrisaterapia leyendo algunos ( ter)comentarios a tu entrada anterior, no me la quita nadie.. ¡Rafa, Campeón por goleada!¡Un beso muy cariñoso, y buen Finde!
I’m not sure exactly why but this weblog is loading very slow for me. Is anyone else having this issue or is it a issue on my end? I’ll check back later and see if the problem still exists.
Should we allow the parents/guardians to indoctrinate the children in their care?As an adult student, I chose to do ‘Logic’ as a high school subject to matriculate and enter university. I think, Logic, along with maths, English and science are essential subjects, before philosophy/religions/culture/social studies/psychology etc. can be studied properly. Logic is where maths and language meet, and like the belief in any supernatural phenomena including ‘God’, a large part of humanity, in common with a schizophrenic episode has a lack of it!
Man, if only Canada had numerous arrests as a response to corruption, campaign finance fraud, illegal email systems to avoid open access to records, and electioneering on the taxpayers' dime.
I searched a bunch of sites and this was the best.
Hi Cecilia,He tenido un flechazo con las mariposas en el cabecero y el juego de cama con rayitas, la tela ideal y la calidad asegurada con L. Ashley.Thanks and have a good weekend!!
Hi Martin,From what you have described Elastilon Strong will work perfectly well in your application. Please insure that the Hardi Backer is level from panel to panel, and follow our instructions for installation over radiant heating, and you should have no problems. You will find the instructions on our website. I am referring particularly to the temperature adjustments before and after installation. It is especially important to remember to maintain humidity within the flooring manufacturer’s recommended range when using radiant heating
L’extrême droite est une perversion. En tous sens elle l’est . Depuis la négation jusqu’ »au Mépris du peuple qui vote pour elle.
It’s a pleasure to find someone who can think so clearly
The ambiguity does leave something to be desired, "Grand Tasting" certainly sounds loftier than "Kitchen Table". I think price was the only clear indicator.For the record, I recently had the Kitchen Table and the food I had with the Grand Tasting was far better.
Thinking like that is really impressive
with I Thought I Knew Mama, Mom vs the Boys, Tara’s View of the World, Mommy Moment, Live and love Out Loud, Project Alicia, Claire Justine, Wednesday Social Buzz, Frugal
I like to party, not look articles up online. You made it happen.
Grande vitória Dina, grande vitória.São vitórias destas que nos empurrarão para o tÃtulo. Aquilo que é conseguido em esforço consegue sempre resultados redobrados, lei imortal da vida que permanecerá imutável até ao fim das trevas.
Marcelo, o BOCA DE RUA agradece a visita, o BOCA entrou em contato com a Suzana do Jornal a Tribuna e pediu para ela retificar a matéria ficaram de dar-nos uma resposta até amanhã, vamos aguardar, mas segundo ficamos sabendo o Jornal a Tribuna não teve total culpa pois a imprensa da prefeitura de Sucupira que passou a informação enganosa e mentirosa mesmo.
Haha. I woke up down today. You’ve cheered me up!
Information is power and now I’m a !@#$ing dictator.
Wow, fantastic blog layout! How long have you been blogging for? you made blogging look easy. The overall look of your website is excellent, let alone the content!. Thanks For Your article about Adobe Photoshop Touch für iPad [Update] | TechnikObst .
The rest of the build is fine except for the video card, if you just change the video card to something newer you could definitely run games like crysis 2 no problem.
Wait, I cannot fathom it being so straightforward.
Thank you, Christie. Whenever we talk about the connection between writers, or between writers and readers, I think of Michael Chabon’s observation that “Every work of art is one half of a secret handshake.”Yeah. It’s like that.
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I really wish there were more articles like this on the web.
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You have the monopoly on useful information-aren’t monopolies illegal? 😉
Two of my most favorite people. Jess, you capture the Chris I know… your talent is amazing! Congrats to you both; it’s amazing how real happiness looks; a little goofy at times but full of love and joy.
In the complicated world we live in, it’s good to find simple solutions.
Ciao a tutti , sono la figlia di Nunzio, volevo dire che quando il Napoli segna un goal il mio cagnolino maltese urla x la contentezza,è un tifoso come mio padre, ciao a tutti,Claudia
Felt so hopeless looking for answers to my questions…until now.
Mi hijo tiene 9 años, él saca la lengua y se lame al rededor de la boca provocandose heridas, constantemente le recuerdo que no se lama, pero el dice que no puede evitarlo porque siente reseco, no se que hacer para que deje de hacerlo…
That’s a smart way of looking at the world.
Dear Donald 73 was my most memorable year in the mountains and I can just imagine you being inspired by meeting Mavis Davidson and her ilk.How well I remember that cover of the first Yvon Chounard cover. Quite impressive compared to Odcars of Bevan Napper's catalogues.Recalling disparate events is all part of the joy of reflection. We learn knowledge in 3 ways:by reflection which is the noblest,by imitation which is the easiest,and by experience which is the bitterest.Happy dreaming and loving.Bob
Here’s where I have to confess something about this entry: although I say this version is the best, I’ve never seen ANY of the other versions. I have been meaning too for years, though, maybe I’ll finally get to it.
That addresses several of my concerns actually.
monaco é tradição,e assim como Monza e Spa, nunca devem ser mexidas, logo depois, Interlagos e Silverstone estão quase semi canonizadas, silversonte desceu de posto pela mudança de traçado, mas até que não ficou ruim como ficou em Hockenheim…e mais uma palavra sobre seu post: Ufa!
I guess finding useful, reliable information on the internet isn’t hopeless after all.
Great hammer of Thor, that is powerfully helpful!
Stellar work there everyone. I’ll keep on reading.