Hi Andrea,
It is hard to get used to the idea that lupus is a fact of life. It affects
all of us differently. Some have it in a milder form, so things continue
along with only a few rough spots. For others it is not that simple. Perhaps
our idea of what is normal changes somewhat. I still have trouble being
satisfied with the changes that I have had to make, and the loss of
abilities. I think I have learned to enjoy the good times more and not take
them for granted. I am glad that you have decided to post. Don't worry about
venting here. That is something we all do. Talking about our tough times
helps as well. I am sorry that I don't have more to offer in the way of
advice. I haven't really found the answers myself.
BJ-Sk. Canada

Hi Andrea
yes, it is hard to keep on going while fighting this disease lupus.
Not one of us has found an answer and so we have this online support
news-group to turn to for some assistance from each other.
I do think you have the right idea in joining your local support group and I
know the research backs me up when I say that those patients who learn about
their illness and participate in their care with their doctors, as well as
in joining other patients in a support group situation, do much better with
regards to prognosis and longevity than do those who lie down and give up.

So just keep up the good fight, even when you are tired girl; and know that
you can rant and rave all you like right here... that we all do from time to
time!!
Be aware of your own body and all the twists and turns of the illness so you
can be prepared when a flare may be coming on... you will eventually be able
to 'predict' the small flares and to get to your doctor for treatment, with
any big ones before they get out of hand if you listen to your 'self' and
learn to 'read' your illness.
We are all individual in this illness and so none of us are exactly as the
other.
The best we can do for each other is to listen, empathize, sympathize and to
let each other know that we do care.
So I will leave you with that and hope that you will come and speak to us
again when you are not sure if you are heading in the right direction...
there is no wrong direction but sometimes just knowing someone else is in
your boat can make the way seem clearer.
Good luck!
hugs from Shelagh

Hi there, I was only diagnosed in January, but looking back have probably
had Lupus for up to 10 years. I've learnt to live day by day, take the good
with the bad. I'm in the middle of a nursing degree at the moment ( just
been given a 6 month leave of absence c/o joint probs). I've dropped one day
at work which has helped; colleagues at work treat me 'normally' when I'm
well, and panic when I'm not. I work in a small hospice in the UK, very
supportive. I feel really crap at the moment, but will be at work this
afternoon cos you don't like to let people down- hands on stuff will be out,
but there will be plenty of paper-work to catch up with, always is in
nursing. Went and had my hair done yesterday to get rid of the grey, looks
much better but unfortunately I've reacted to the dye, can't win!
Still waiting for rheumatology appointment, but occupational health
department are onto it.
Sorry, I was aiming to give you a boost, and now seem to have winged on a
bit,
DEBI
XX

Thank you all for writing in.  I feel better knowing that I am not alone in
feeling helpless sometimes.  Today, I feel better (mentally) than I did
yesterday.  One day at a time, right.  I am learning.  Your words have been
inspirational to me and I will keep fighting the "good" fight.  Thanks for
your support....I really needed it.

Hi Andrea.  Bless your heart - i hope ya'll don't get hit with Jeanne...
doesn't look good.  Ivan has doubled back (as you probably well know) and is
now taking aim at my area.  But i imagine it will just be some heavy rains
here. <fingers crossed>

I understand denial.  There are pros and cons to denial.  One shouldn't
"give in" to the disease and let it control their life.  But to ignore the
boundaries our bodies set is another matter altogether.  I've seen the ill
effects of both extremes and so I try to meet this monster somewhere in the
middle.

I have found that I can give up certain things that others have trouble
giving up but I have replaced them with things I can do.  Examples: I can't
get out on a bright sunny day.  My freckles are almost gone after 35+ years
of 'em.  And I miss 'em.  I can't walk the mall with my daughter and I have
to sleep more than the average person.  But... I can go out at night and use
a telescope and look at the stars (no UV exposure there) and I can have fun
with my hobbies (stitching, calligraphy, pen & ink) and so on.  Try to look
for things that bring you joy that will help you cope with the things that
might make you sick.

I'm a big advocate of  watching UV exposure.  I think because many patients
don't see the immediate effects of it (it can take a few days for the flare
to set in after excessive exposure) they don't connect their activities with
the pain.  Not all lupies have UV sensitivity but it's a very high
percentage.

To be honest, I don't think it ever is or was.  But that's a philisophical
discussion rather than medical. :)

well - this is a place of support.  And that means that whatever *you* need
is what we want to provide.  If you need to vent, then feel free to do so.
Everyone here understands that completely!

Normal life.  heh... when I married my second husband he asked me what I
wanted and I said "a normal life" - at the time I was dealing with the
aftermath of a nasty divorce from a drunken, bipolar jerk.  (his bipolar
disorder is not what made him a jerk) and though I had a lot of pain I put
it off to stress and the fact that I have scoliosis.  hubby said he had
every intention of providing that normal life. then i got sick.

someone entirely well-meaning once told me that Lupus is a "character
building" disease.  I don't want no stinkin' character!  But.. the truth is
that I have gained a great deal of understanding and tolerance for others as
a result of what I've gone through.  But I still think I could have gained
that a better way. :-)

if you haven't read the FAQ yet, please do.  There's a section in there re:
the things we can do to reduce the effects of flares and of course learning
our own boundaries and living by them within reason is important.  Don't
curl up in the dark and hide from life - but don't spit in the face of the
disease either.  You said you've started working again - what do you do and
what is the physical environment like?  Do  you know if you are
photosensitive and if so is it possible your work environment is
contributing to the problem?  There are steps employers can take if so (such
as providing covers for fluorescent lights) and steps you can take to reduce
your reactions (using sunblock at all times.)  These are just questions and
since I don't know you I could be way off-base about your particular case.

Welcome to ASL and never feel that you can't express yourself here.  The
site is not here to be uplifting - we are here to uplift each other and be
uplifted when we need it.

blessed be,
kcat