Re: weitght gain & copaxone


Jenny & Jay wrote:
Rose, sorry about that. I sure wouldnt hurt you for the world. Guess
never thought about it from your point of view. Must be brain fog. I
feel terrible too. Got any room under that rock for a friend?

Jenny, i apologize again -- you didn't do anything wrong, i was just
having a moment. :/

a little over a week ago i started to lose weight for no reason again.
the doc wants me to do what they all decided was the best thing --
start early, try to head it off. having been thru it a few tims, i've
noticed that i doesn't eem to really *matter* how much i eat and how
often -- i lose weight, then after a while, it stops, and iv'e got a
new 'set point,' is how it seems o work to ME. but the doc insists i
cram in as many calories as possible, and Dennis gets so freaked out
when it hapens that he keeps telling me to eat more, more, more....LOL,
'mangia, mangia,' he's like somebod's Italian Mama. he's kind of mad at
me because i did't say anything about it -- i didn't even really notice
it myself, i don't stand on th scale every day, i go more b how my
clothes fit, but he noticed it first, insisted i stand on the scale,
and stood there watching me like he thought i'd lie about my weight if
he wasn't observing.

the reason my neuro halted my Novantrone infusions last year was
because after the 1st one i went into weight loss mode again. Dennis
knows i want to continue, and last neuro visit, the doc said he'd
agree to the continuation (tho he was pimping Tysabri as a hopeful
alternate, but if it's going to be approved for RRMS only, then
Noantrone it is), and he's afraid i plan to hide anything that might
make the neuro reconsider (which would't be possible anyway cuz the
neuro insists on getting my weight before he'll agree to do *anything*
-- every single time).

i also found out the M.S. goroup i started going to when my former one
split up is planning to segregate the people with M.S. who had been
attending. my feelings got hurt, and when my feelings get hurt, first
eaction is to get mad, instead of sad. group leader made phone calls to
SOME of the members, letting u kwno that they were 'planning' a
separate group for those of us who are SPMS. at first i thought it
wasn't a bad idea, and asked about the new group, THEN I find out
there's no 'new group' -- the SP folks are supposed to start one, the
old group leader will help with advice on how to start one, blah blah
blah. the bottom line is that the RR people were 'uncomfortable.' i
knew it could't be wheelchairs, becaus there were RRMS folks in
wheelchairs there, and in fact some of the RR people were actually more
disabled (or more 'obvously disabled' i guess) than some of the SP
people. so why were they 'uncomfortable?" she danced aroud a little,
but finally said she *thought* it 'probably' had 'something to do' with
the steady progression -- people who are having great remissions and
living their lives almost as they did before their diagnosis get
freaked out by the reminder that sometimes, no matter WHAT they do,
RRMS people will become SPMS people. and the group has to "protect"
these fragile little RR members from the scary, frightening sight of
other folks with M.S. who no longer have remissions.

i guess i'm still mad -- look how snotty i'm being. but still, for
REAL. they aren't kindergartenders who need to be protected from scary
things till they're older; they're adults i their 20s and 30s. firsrt i
got mad, then I DID get sad -- like, *I'm* the big scary monster in the
closet people need to be protected from???? i don't do or say anything
depressing -- just the mere fact of my *existence* is enough to make
people depressed? crap, now I"m getting depressed myself again!!

i'm used to able-bodied folks not understanding; unless they have a
loved oen with M.S., there's no reason why they should understand. i
guess i was naive to think that other folks who had M.S. themselves
would be more understanding, bt i also guess i need to accept that
people are human and theyget scared, and i suppose it's understandable
-- you know, *I* don't like the slow but steady disease progression
either, but i can't 'escape' from it by, like, barring *myself* from my
life, you know? it also makes me sad for their sakes a little bit -- i
think of somebody like white lynx Larry, and how much good i've gotten
frojm reading his posts, and how much he's got to share with people of
all ages and stages of progression, and how much i would've missed out
on if i'd decided he was too 'scary' to listen to because he was
quadriplegic or some equally dumb reason.

i keep trying to dose down my Tegretol, and the nerve pain keeps coming
back -- oi ad abot a week wthout it, felt GREAT -- so lots of the time
i'm either doped to the gills or hurting, which makes me grouchy, but
i'm very sorry to have gone on a rant behind your post -- i try NOT to
take things out on innocent bystanders but sometimes i slip[ up.

there's also the fact tat Dennis wn't touch me -- not just sex, i mean
he acts like he' honestly, truly afraid that if he touches my arm he's
going to break it or something. i can also tell he's not as attracted
physically as he was when i was bigger, but i really am just as stuck
as someone who's gained weight due to cause beyond their control -- he
thought i looked fantastic when we met; i was a size 7, and i've lost 4
sizes over the years we've been together. even when i eat like a herd
of cattle, i've never been able to get back over a size 3. i've even
ragged on him a little, like "MOST guys bitch when the wifey *gains*
weight,' and he just says "I'm not most guys.' true dat!

i think what's p is that i'm getting into a period of *adjustmet* which
is different from 'adaptation.' we adapt as we go along, but sometimes
a point comes when your life IS different, and the adjustment takes a
little longer, in my experience. it involes coming to peace with
things, which is harder than just 'accepting' them (for me at least).
that's wher ei'm at -- might take a while to reach a renewed sense of
contentment with reality, but so far, i've always reached it
*eventually&.

uhmmm, sorry for the thread sprawl. =:o i never gained weight on
Copaxone -- as far as i can tell, the only drug where i can count on
weight gain is steroids, and that's not *healthY* weight gain. i didn't
gain any on the Interferons either.

MAN, is t raining out there! Alaskan storm coming thru San Diego --
BRRRR!!!!

better shut up before the electricity goes. ;->

XO,
RD

.

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