Joined: 03 Dec 2003 Posts: 2 Location: Phoenix, AZ
New W/tons of Questions... Posted: 12-05-03 01:14am
First, I would like to say hi! To
everyone. :d I found this site 3 days
ago and have been browsing since. There
are so many things that I have read that
are useful. I wish that i'd found you
all years ago. It seems that somehow
reading your experiences don't make me
feel so alone.
i'm 21 I was diagnosed with lupus when I
was 18....Couldn't walk or feed myself or
even function at the time. I was put on
plaquenil after a year I went into
remission.....Did great and then decided
go ahead and have myself a baby....Big no
no. She was 2 months early and I was in
a coma...They said that combined with my
heart failure that there was no way that I
would make it through it alive. But
*suprise* here I am. Since the birth of
my daughter my poor ol' doc hasn't been
able to control this monster....I've been
in and outta the hospital about once every
other month occasionally forgetting to
skip a month.
They changed my meds.....I'm taking
methatrexate now as well as vioxx and
plaquenil which seem to be making a big
difference. I was reading about how the
methatrexate has effected some of you with
horrible nausea.....Am I to expect that in
the future? It makes me a little naucous
now but does it get worse??? I've been
taking prevacid for my stomach since the
birth of my daughter....Would that curtail
some of those symptoms??? Also since
starting meth. My hair has started to
fall out....I can't run my fingers through
it without taking the hair with me.....Is
that normal?
I've also just moved to phoenix and was
wondering if anyone was familiar with a
good rheumy here.
You guys have no idea what finding this
site has done for me....For once I feel
like I can talk to someone about what's
going on and they can relate.
*muah* vanessa
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daisy3
New User, Becoming EHEALTHy
Joined: 29 Nov 2003 Posts: 9 Location: Pennsylvania
Posted: 12-05-03 20:26pm
Hi vanessa,
you called it right...A monster . I
just wanted to say welcome. I'm new here
too, and you're not alone. I think
finding a good rhuemy is the trick. Hope
you can back on track. Taking care of a
baby must be exhausting. Take lots of
naps! I couldn't imagine that at this
point in my life, although my monster has
a friend called menopause........ !
Take care and let me know how you are
doing! Daisy
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daisy3
New User, Becoming EHEALTHy
Joined: 29 Nov 2003 Posts: 9 Location: Pennsylvania
Posted: 12-05-03 20:26pm
Hi vanessa,
you called it right...A monster . I
just wanted to say welcome. I'm new here
too, and you're not alone. I think
finding a good rhuemy is the trick. Hope
you can back on track. Taking care of a
baby must be exhausting. Take lots of
naps! I couldn't imagine that at this
point in my life, although my monster has
a friend called menopause........ !
Take care and let me know how you are
doing! Daisy
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 12-05-03 23:58pm
Welcome to the group!
I know all kinds of results with
methotrexate. When I was giving myself
weekly injections, I had one or two bad
days and the rest were okay. I had
friends who never felt *any* nausea at
all. Then I had other friends who never
got over the nausea...Let us know how it
goes for you!
Good luck with the rheumy, as daisy 3
said, that is *sometimes* one of the most
important aspects of controlling the
lupus.
Hugs!
Ladybrannon :d
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vfranklin
New User, Becoming EHEALTHy
Joined: 03 Dec 2003 Posts: 2 Location: Phoenix, AZ
Posted: 12-06-03 00:27am
Thanks so much....Yes daisy, taking care
of the baby is exhausting....I nap when
she naps. It's the only way that I can
possibly keep up. she is a
challenge....But sometimes when I would
have no reason or drive to get out of bed
her cute little smile makes living through
this worth while.....
Thanks for everything
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jonesm51280
New User, Becoming EHEALTHy
Joined: 22 Dec 2003 Posts: 10 Location: Seattle,WA.
Hi Vanessa Posted: 12-22-03 15:43pm
Hi my name is melissa, I was also dignosed
at 18, had seizures, kidney faliure, cemo
and lost my hair and was told I was not
going to make it, and another suprize i'm
here too!! I had a miscarriage three
monthes ago and did not even know I was
pregnant because of normal cycles. I want
a baby but that is exactly what I am
afraid of is coming out of remission. I
wish you well and would like too here how
you are doing if you would like to e-mail
me..Keep and
always keep peace and love in your heart
and you'll be ok!!Melissa
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mia
Experienced User , Rather EHEALTHy
Joined: 25 Jan 2004 Posts: 147 Location: dallas
Posted: 01-25-04 22:15pm
Hi vanessa,
not only am I a hair lose survivor i'm
also a hairdresser. Anytime the body is
in distress it takes nutrients away from
the hair and skin which the body sees as
superfluous to survival. Thats why we
look sick. Aside from that, in my own
experience and professionally, I can tell
you that cox2 inhibitors like vioxx are
common culprets of hair loss. There is
no other product currently available that
not only helps with the pain and
inflammation, but also prevents future
damage from occuring. It's hard
deceiding whether you want hair or pain.
Also thyroid problems cause hair loss
which others members here have said they
also have, as do i. When my thyroid is
off, hair flies from my scalp. Thyroid
tests are very simple.
Congradulations on your baby, but did you
know it is extremely common to have
sudden, extreme hair loss exactly 3 months
after the birth of a baby. The good news
is, this always comes back!
. I
just wanted to say welcome. I'm new here
too, and you're not alone. I think
finding a good rhuemy is the trick. Hope
you can back on track. Taking care of a
baby must be exhausting. Take lots of
naps! I couldn't imagine that at this
point in my life, although my monster has
a friend called menopause........ 
!
Take care and let me know how you are
doing! Daisy 
she is a
challenge....But sometimes when I would
have no reason or drive to get out of bed
her cute little smile makes living through
this worth while.....
