New to the Site, Not New to Lupus Posted: 10-02-03 15:48pm
Hi all...Clarebear back with some time now
to "tell my story." it's rather short but
of course being an english major it tends
to get long...
So here goes...
I went to the hospital on 4/12 with a
really high fever. The whole month prior
I had really swollen joints, fingers,
knees, ankles...I couldn't sit down, not
even get into my car or get on the toilet
without crying in pain. The urgent care
people (yeah, I know, don't remind me)
said I was probably allergic to shellfish.
And i've been eating it all my life so I
blew her off (as I should have).
Anyway, I got admitted to the hospital the
next morning (spent the night in an er
bed), and all the doctors who came to see
me wrote lots of notes in their little
pads; the rheummy on duty thought it was
lupus and I was officially diagnosed on
the following monday by my now current
rheummy and a nephrologist (kidney
specialist for those who don't know what
that is). I have sle. I sat in the bed
and said, "ok, what is it and how do I
treat it?"
hence forth from there...I had a kidney
biopsy done that same monday, it came out
negative (which was great for me) but I
was spilling a lot of protein into the
kidneys, I was anemic, blah blah blah and
they put me on cytoxan for 6 months
straight (once a month). Then after that
session I went onto the once every three
months regimen (which I am still on). I
take far less drugs than other people;
norvasc, avapro, prevacid (to keep the
heartburn down and yes I take it daily),
prednisone (going down to 17.5 next week)
and a bunch of vitamins.
I didn't gain any weight from the
steroids, I actually lost weight since
being diagnosed. I blew up to 145 while
in the hospital but am now 125, the weight
I was about three years after I got
married (i got married at 119 lbs, how yes
I do miss that but oh well).
I am 32, chinese-american (more like
american chinese) and have no children.
I am sensitive to the sun but don't get a
rash, I get a really high fever the day
after I have too much exposure, and I also
get dizzy when i've had enough sun (hence
that's how I know when "too much exposure"
has occured). Fluorescent lights don't
bother me, which is good as I work retail
but only 20 hours a week (i was full-time
until this week). I also eat those
veggies from the "night shade" family
we're supposed to avoid - eggplant,
peppers and tomatoes. Sorry, can't give
it up. Don't get much reaction from them
at all actually.
One of the things I noticed I can't eat
though is peppermint lifesavers. They
give me severe heartburn. But I can have
habanaro pepper chipotle sauce and
habanaro flavoring in my steamed fish.
Go figure.
My husband is very supportive of me and is
amazed at how well I am doing. So are
the doctors. So am i.
Thanks.
|
Jenn
Experienced User , Rather EHEALTHy
Joined: 09 Sep 2003 Posts: 78 Location: Canada
Hi Posted: 10-03-03 07:14am
Hi clarebear,
it's nice to meet you. Your story sounds
a lot like mine. I don't take to many
meds, plaquenil, prevacid, depo provera(
birth control, I can't take estrogen),
anaprox. I don't take prednisone on a
regular basis because I won't. I know
it's stubborn.
I'm 22 and married to the most supportive
man in the world. I also work retail but
it's becoming really hard lately.
Let us know if you have any questions.
It's great to have you here.
New to Site Not New to Lupus Posted: 10-05-03 22:05pm
Hi jenn...
Thanks for the encouragement; i've been
working retail for the last 10 years and
just now went to 20 hours a week, part
time no responsibility. People at work
still forget how sick I am and I have to
remind them once in a while that there are
limitations to what I can do.
Right now I am a little frustrated bc my
schedule isn't going the way I want it to.
I am, for example, going on vacation on
friday but apparently I am working at the
same time.
Um, guess who's not going to be at
work??
Anyway...After having been relied upon for
so long, as a manager and then as a
"seasoned" sales associate it's really,
really getting tiring.
Clarebear
|
Jenn
Experienced User , Rather EHEALTHy
Joined: 09 Sep 2003 Posts: 78 Location: Canada
Working Posted: 10-06-03 09:40am
Hi clarebear,
i know what you mean about your coworkers
forgeting or not understanding. My boss
trys to understand but I can tell that she
thinks I make some of it up. The problem
is that people can't see tired like they
can see a skin rash.
I'm finding that i'm tired all the time
now. Work is just making that a lot
harder. I don't know if I should drop
some hours. I really can't afford it. I
can't afford to be sick either I suppose.
Jenn -
I am in a very lucky situation as far
as health care goes. For the last year I
had to work full-time hours (32) to
maintain the full-time coverage but the
company I work with was very kind to
enable me to continue the coverage when I
was on a leave of absence for four months,
and also when I came back to part-time
sales (i went from part-time back to
full-time in four months...They kind of
told me I had to but when it was time to
do the f/t I was ready).
Now that my husband is working, we use his
coverage. He'd been in college for a
long time (let's see...He's 34 and he just
got his bachelors in december 2002 if that
helps) and with the workforce the way it
is here in nc, he'd been doing temp work
for about six months until he found
something. Then of course there's the 90
days most companies make you wait now to
get the coverage (it is really annoying
b/c I had to wait the same 90 days when I
first got hired by the company I work for,
this was last year in january before I got
sick)
anyway I digress. The company I work for
also has health-care benefits for
part-time associates as well, which is
great for those college students who are
not on their parents coattails or are
about to be tossed into the "real world"
(whatever that may be, I mean come on they
drive lexus and beemers and they're
sophomores!!!)
so that's the story there. It also helps
with the ada being enacted. I wasn't
eligible for fmla b/c I hadn't been with
the company for a year when I got sick;
now it's a different story of course.
You could always apply for ssdi. I am
not eligible b/c I am able to work at most
32 hours and I am not as sick, I suppose,
as the gov't would like.
