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Old Thu Aug 9, 2018, 10:09 AM
KatailS KatailS is offline
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Join Date: Apr 2016
Location: Avon, CT
Posts: 41
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Hi David
Thanks for checking in.... I was thinking of you and wondering how you were doing. I was hoping to see better numbers for you, and am thankful that they are not terribly worse. Story of our lives, eh?

I understand how having a name helps, it almost gives “validity” to your numbers.... strange as that may sound. I have a label from my doctor at Dana Farber but my local hematologist is reluctant to use it. I don’t know why. I guess I am lucky to exist in the area between ‘healthy’ and ‘sick’..... and should look at the bright side.... I am lucky that I don’t need treatment at this point. But it is tough because I know there is something deep inside of me that isn’t ‘right’ and nothing I can do about it. And no one (outside this forum) understands..... unless people can see an illness, they don’t believe it or validate it. Maybe having that label will help a bit for you.

I am not happy to hear that your numbers are slightly worse and that you are getting sick more.... hoping the extra supplements help. I do understand about the exercising... and I encourage you to do what you can do even tho it does seem to be more challenging. I was in the best condition of my life when my pancytopenia first reared it’s ugly head. I keep trying to stay active and fit, but it is harder as I bruise very easily and feel very light-headed..... and my latest problem is that my legs get very swollen the more I do..... but I keep at it. I hope you can too.

I am also grateful to everyone on this forum ... you are inspirational and your stories give me hope. I have learned so much from you all and your experiences and if it weren’t for you, David, and the people on this forum, I would feel very alone.

Good luck in your new house! Keep positive, my friend,.... and don’t forget to live each day to the fullest
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Kathie - 54 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone (now increasing), monitor bloodwork every three months
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