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Poppycath 
10:26am, August 6, 2009
It has been several months since I have written on this site, and this is because I am now 'Living with Myeloma' rather than facing death. I've had MM for over 6 years now, and been on Revlimid for over 4 years, and life is going along quite well. Yes, my paraprotein is starting to go up by a point or two, but then it drops down again, and life goes on. Over 4 years ago I got to an all time high of 90 (australian recording method) and by all accounts I should have died, but hey, I didn't and here I am with a paraprotein level that bounceds from 3- 9 and Im not worried. If it jumps up significantly, then I'll have to do something -- I'm considering Pomalidomide at the moment, but I don't know if I'll be able to get it when the time comes -- we'll just have to wait and see. Living with myeloma -- when you have a Bob -- the best carer in the world -- is not a bad thing and our life is a good one. But I'd like to give one word of aevice to all -- if you can find another 'addiction' apart from researching the net for new drugs and solutions -- takes your mind to a completely new place. My daughter got me started on facebook and I got involved with a game called FARM TOWN which has become my addiction. I no longer spend hours searching the net for myeloma information, but I PLAY farm town and lose myself for hours, building a farm, working with others and chatting to people all over the world about all sorts of things. So,....if you can see your way clearly, consider stepping away from myeloma for a while and taking up a new world of interest!! Best wishes to you all, Cath
Comments
Oh, PoppyCath, I applaud you. And yes distraction is a good thing sometimes. My Tom has had neuropathy and on the verge of the bmt but we still keep going on. I try to find the good things in life and laugh a lot. I need that so I won't go into a complete depression "coma" again. Thank you for sharing.
SarahStarfish
Hang in there Sarah -- this time will pass and he will probably settle into a new way of living. Its all about learning to live a new way, getting use to letting others help you to do many of the things you use to take for granted, and the like -- but it is possible to change your expectations and look forward to new ways of living. You are in my thoughts and prayers during this especially difficult time, but know that this time will pass and a better time will come. Best wishes, cath
Poppycath
I am so happy for you. You are an inspiration. God bless you!
dee1003