glad to hear you at least got your meds. it was not at 9. am because the
doc was not in pain.

-----Original Message-----
From: Cleveland, Kyle E.
To: [log in to unmask]
Sent: 6/28/2002 10:26 PM
Subject: New web site idea

That's right, Kat!  Forgot about the yahoo/cpadults.  Wouldn't folks
need a
Yahoo logon to browse?  My ISP (through Time/Warner) will give me 15 Mb.
I'm
thinking, though, maybe we could get a .org or .net URL and get someone
to
put it on their server gratis.  Laura suggested UCP---blew coffee out my
nose!  Strictly personal opine here, but I've never had one good
experience
with UCP: either as a kid or adult.  I may be wrong, but I think most
adult
CPers have the same view of UCP as many MD folks have of Jerry Lewis:
The
French can have them both.

The doctor finally called at 7:30 PM and pre-released a standing script
I
have for breakthru pain meds on the 1st of each month.  Why couldn't he
have
done that at 9:00 this morning?

Anyway, I was envisioning something along the lines of
this:http://walden.mvp.net/~lackritz/

"Granny Barb" Lackritz is a Chronic Lymphocytic Leukemia patient (like
Laura) who started her webpage because when she was dx'ed with CLL there
was
precious little web info related to this fairly rare leukemia.  I
certainly
would not want it to be "Kyle's page", but she has a boatload of links,
stories, etc.

There's lots of stuff already on CP, especially for kids, but no
relevant
resources specific to aging and CP.  Anecdotal evidence that I've
garnered
pretty much says that the "system" (research, associations, physicians,
medical societies, etc.) loses interest in helping adults.  I don't mean
to
slight anyone here, but if you are among the "walking wounded", you're
pretty much left to your own devices.

By "walking wounded" (phrase is growing on me) I mean those of us who
were
ambulatory and independent during our youth and early adulthood.  You
all
know my story: fit and athletic through my mid-thirties and then Bang!
Ten
years later I can barely get from point A to point B.

Lots of folks come to mind offhand:  Bobby, Kat, Ken, me, Rayna, the
Jennifers, etc.  That's just from "our" little village.  There are a lot
more besides us.

Sound like an idea?  Kat, could you get back to me on the Yahoo site?  I
would like to make sure its easily accessible.

Thanks!

-Kyle

-----Original Message-----
From: Salkin Kathleen
To: [log in to unmask]
Sent: 6/28/02 5:41 PM
Subject: Re: Rough go right now...

Kyle, we could always use my Yahoo site, cpadults.  And I've got website
space via my ISP I can use.

Kat