Re: weitght gain & copaxone
- From: "rose" <rosedawn_scott@xxxxxxxxx>
- Date: 3 Apr 2006 07:59:36 -0700
Alex wrote:
I'm the type that would put the leader(s) on the spot & ask how they
came to arrive at the decision. Did they do a survey? Obviously not,
or you would have heard about it sooner. I'd show up at the next
meeting and make it the topic of the day, whether they wanted to or not.
But then, thats just me. :-)
well hi there Alex -- i missed all this on the first go-round (maybe
got lost amid the OT:OT:OT:s), but here it is this morning, what do you
know? ;->
LOL, Dennis and i talked about strafing the meetings! they're held in
the public library, so maybe they can say 'you're not welcome in the
group' -- but they've got no authority to tell me to stay out of the
*library* itself. so, we joked about showing up every week, 'browsing
the racks' closest to the group meeting room, glaring and giving them
the evil eye. }:D not really something i plan to do, but our evil
ideas were funny enough to get me laughing, and laughter just loves to
chase the blues!
after i got over my hurt feelings, and my 'how dare they??!?'s, i
started to think -- you know, they went about thiings in a
less-than-perfect way for what i consider a very dumb reason, BUT, it's
actually not a bad idea to have a group specifically for SPMS folks. in
many ways, we've got the same problems as RR folks -- in many ways,
we've got the same problems as healthy folks too! -- but it's true that
some of the things that take up a lot of discussion in M.S. suport
groups, such as CRAB drugs and relapses, and employment (I'm thinnking
of my former group specifically, not that everyone who's SP would be
unable to work, cuz that ain't so) aren't as much at issue with most of
us, and that other issues *do* tend to be more important than for more
newly-dx'd RRMS folks who still maintain a lot of function.
so, i keeping iwth my tradition of *using* anger, rather than trying to
suppress it, i took th little energy-boost my Grrrr! bought for me, and
started contacting the other SP refugees from the group, saying 'ok,
boss-lady told us they'd help start a new group, let's get in on the
action!' ;->
i still on't know how that's going to go -- a lot of folks are just
tired, you know, tired of having to look for ijnformation on their own,
tired of having to try to think and plan when their thinking/planning
time and energy are taken up by more vital things, tired of making
phone calls to try to get things in motion, just plain TIRED. we've
kicked around the idea of phone and/or online support -- nothing's
really being acted on, other than i did request the 'How to start an
M.S. support group in your area' info-pack. i'm doing a bit at a time
-- i get sad and mad all over again, thinking how these folks all had
their plans in place, and then bigotry, prejudice, and stupid, stupid
fear just laid those plans to waste in an instant, and i need to be
careful not to let m own feelings get too carried away. i mean, totally
irrational -- i have to fight the urge to blame people generally,
rather than the specific people i'm actually mad at -- i was hating on
everyone who was still RR for about a minute.
one thing that started as a joke but i think i'm really going to do, is
make that "As you are, I once was" flag, with a wheelchair instead of a
skull, and fly it off the back of the power chair IF I ever get
approval (still waiting...and waiting...and waiting. it seems like i
hear about folks whose doc writes out the Certificate of Necessity, and
2 months later they're out practicing wheelies. gah, sometimes i wonder
if i've been cursed or something, this is the 2nd YEAR i've been trying
to get my approval) i'll leave the 2nd part of the slogan "As I am, you
shall be" off, though, because npt everyone *will* need a wheelchair.
but, you betcha, we scary SP folks in wheelchairs *did* start out
able-bodied, and we all started out as RR, so....accurate!
seems to me like there would be a lot less fear, and
whisper-campaigning, and sadness, if everyone learned what i was told
was Rule #1 about M.S. -- it affects everyone differently. because i
need a wheelchair doesn't mean 'you' will need one; because i went from
RR to SP doesn't mean 'you' will, etc. look to your own disease course,
and quit being scared of those of us who've progressed further -- it's
not Your Bleak, Hopeless Future, it's just another human being who's
had a rough time with M.S., and maybe, *maybe* if you can get past your
fear, you'll find out he or she has a lot of experience and you can
learn some valuable things by talking with them. maybe you can even
find a role model (roll model? hee!) for 'in case' your own disease
course does take a downward turn. maybe they'll even turn out to be
cool, fun-loving, and interesting people, if you just look past the
damn *disease* at the person who has it.
so we'll see. maybe a group of SPMS folks will arise from the ashes of
the former group like phoenixes. or maybe not. better use of time,
energy, and yup even anger, to focus on at least seeing if we can get
something going, than to sit around stewing about what jerks the old
group were, and how we're all willing to be pushed aside because we're
all too friggin' tired to do anything else.
rose
.
- Follow-Ups:
- Re: weitght gain & copaxone
- From: Alex
- Re: weitght gain & copaxone
- Prev by Date: Re: Rambling/Whining...
- Next by Date: Re: Rambling/Whining...
- Previous by thread: Re: weitght gain & copaxone
- Next by thread: Re: weitght gain & copaxone
- Index(es):
Relevant Pages
|
Loading
