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Myelofibrosis-

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Subject: myelofibrosis-
Date: 04/22/2008

I'm wondering how to help my spouse cope.  He is VERY caring and supportive, but sometimes gets down "thinking about living without you".  We are new at this as I've only recently been diagnosed.  There are no support groups in our area. 

Anyone have suggestions?

Thanks - Bee Dee

Subject: RE: myelofibrosis-
Date: 06/02/2008

Hi there!

My husband had more trouble accepting my diagnosis than I did. Sounds like you may be in the same position. 

It's
a cliche, but time WILL help him. I was dx'd last August, and after a
month of avoidance by intellectualizing (studying, putting together
graphs, researching, etc.) we finally came up for air. My wonderful
husband simply fell apart. He signed up for early social security
payments and we went on an extended motorhome vacation, because he
couldn't stand thinking that we'd never be able to do it together.

 Now
we're coming up on a year since diagnosis, and we've both calmed down a
lot. He's working short contracts here and there -- a good plan since
at one point he was spending his retirement choosing drapes for our
house! He scanned photos, organized his tools, and finally decided that
I wasn't going to die right away! (I'm smiling as I write this.)

So
give your husband time to grieve the dreams. And maybe, just maybe,
you'll both be able to realize some of those dreams. I have a blood
draw once a month -- easy to arrange no matter where I am; just get an
order from your doc on an rx pad. (My husband still graphs my CBCs. I
think it gives him a modicum of control -- a feeling that he's doing
SOMETHING! He's a guy, after all.)

 FWIW, I'm 57. Husband is
64. We did have some tensions as we tried to absorb our new reality,
but are doing okay for now. Maybe that's becauseI I'm doing okay for now. We'll see how well we cope as the disease progresses. 

 Good Luck to you!

Karen  

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