Re: A PF Newbie - Little History

[Guest guest]

Actually your remarks just reminded me that my conditions do not just

impact me, but my family members as well and that information about

them is important too. I am lucky that Cheryl has been able to

handle things so well. Dealing with Matt's day to day stuff has

always been a lot of work, then with my " stuff " .....WOW!

When I had the visit to the ER and " resort " (as we call the hospital

on the Stills Disease board)when PF was first discovered, my wife

called Amy Jo in San , TX and told her what was going on and

what she was dealing with, Amy Jo did not have to be asked twice.

She just responded, " let me see what flight I can be on to help " .

Her being there to help with her brother was a God Send for Cheryl.

She knows about my Stills Disease and now the PF but is not fully

aware of the possible prognosis. Of course, we are still working on

that in my mind as well.

Matt understands that I do have a " condition " (or a number of them)

and that I need to see doctors regularly. He also understands when I

go to the hospital. In fact, he sometimes obsesses over it. There

are times where he will simply say (sign) " I can not talk about

the " H " word. But he is also obsesses about the weather.

Tom from PA

>

> Tom ... I don't remember what I said to you that reminded you

it " is not just you " ...I hope I didn't sound rude!! I'm pretty

outspoken, well " outwritten " maybe. lol.

>

> We have a son in Phoenixville. A " big wig " with IBM. He is a

computer genius.

>

> I'm glad Matt is able to live at home with you and Cheryl.

> The signing reminds me of when my daughter Zoë was in the third

grade she volunteered to sign and help the little non-speaking kids

who needed tutoring. She got out of school early and went to a

special class. I was so proud of her and she did it all on her own.

>

> Do Matt and Amy Jo know about your disease?

>

> >

> >

> >

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