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MDS Myelodysplastic syndromes

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  #1  
Old Thu May 19, 2011, 11:22 AM
Dick S Dick S is offline
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Join Date: Jan 2008
Location: Florida
Posts: 189
Having a bad day.

Just having a bad day, so wiped out (fatique) I can barely make the coffee today. Just wanted to cry on someone's shoulder.
I keep telling myself, tomorrow will be a better day.
Thanks for listening, only you understand what I mean.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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Old Thu May 19, 2011, 12:23 PM
DanL DanL is offline
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Hang in there Dick. When I am having those days, I sit down for a few minutes, maybe even close my eyes for a while with the determination that I will be ready to go the next try up. It usually works pretty well.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #3  
Old Thu May 19, 2011, 01:35 PM
Sally C Sally C is offline
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Join Date: Dec 2010
Location: Chesterfield, Va.
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Hey Dick,
I wish I had some pearls of wisdom to make you feel better. I can't fully identify with how you feel as it's my husband who has MDS.
Just know that you are never ever alone and that many people are concerned and care about you - those you know and those of us who only know you through Marrowforums.
I will say a prayer for your comfort.
God Bless you.
Sally
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Old Thu May 19, 2011, 01:46 PM
mscrzy1 mscrzy1 is offline
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Join Date: Jan 2011
Location: California
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So strange because I'm having the same kind of day. My alarm went off and I just layed there wanting to cry because I just want to sleep. It seems that all day, lately, I look forward to the moment I can go back to bed. I definitely feel your pain. Luckily, I can feel a little more human after some coffee. I caught myself drinking 2 entire pots one day!! Egads!! Haha! I hope your coffee was able to bring you around a bit today.
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil

Last edited by mscrzy1 : Thu May 19, 2011 at 01:48 PM. Reason: typo
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Old Fri May 20, 2011, 06:56 AM
squirrellypoo squirrellypoo is offline
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Location: London, UK
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Hang in there - everybody has those days. Just recognise that some days will be bad, and others will be good. This too shall pass...
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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Old Fri May 20, 2011, 03:38 PM
BerryP BerryP is offline
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Join Date: May 2011
Location: Chester, England
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When I have a bad day I can usually identify some action or busy day that has wiped me out, sometimes it is a bad night or two. I find two complete days of rest, and by that I mean get used to sitting and reading, or gazing in complete boredom at the tele. Don't do crosswords or puzzles or cook, walk etc. I know it sounds pathetic but if you can manage it I hope it works, it does for me. Good day today, managing to pick veg from garden and do some cooking. Hope tomorrow better and remember it is your job not to do stuff that you know will whack you out unless you enjoy it! Only one life so enjoy it, even if it is one huff puff at a time. Incidentally that is my husband's nickname for me, huff puff. Yes we feel 30 years older than we should and its bound to get you down, but knowing this rollercoaster of hemo diseases you will have a better day soon. Best wishes
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