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Medical Forum / Diseases and Disorders / Lupus / December 2005

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Help me understand her condition and how to support her.

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netnews.comcast.net - 18 Dec 2005 21:19 GMT
Hi,

I've recently started dating a wonderful woman who has lupus.  I don't know
much, so I'm turning to you folks to guide me to good information (web
sites, but especially books) that will help me understand her condition and
how to support her.

I hope you can help!  :-)

-- John
julia - 18 Dec 2005 22:18 GMT
http://groups.msn.com/killalupus
hello john.i try to help and study about lupus.if you interested feel
free welcome to my group.my goals is to help in education for patients
whith lupus.
http://groups.msn.com/killalupus
join i will apply you.thank you.,julia
Mair - 19 Dec 2005 02:32 GMT
Hi John,

Lupus is a complex disorder that manifests differently in almost every
patient.  It is an "autoimmune" disorder which means that the body has
become confused as to which tissues are "self" and which are "not self."
Immunity is the set of defenses that our body has to keep outside and
harmful substances from coming into the body and invading it.  The immune
system of a person with lupus turns on perfectly healthy tissues, and treats
them like invaders.  This causes the patient inflammation, pain, fever....
and this is your first lesson in lupus.  There is never a last lesson.  We
are all still just boggled by what it can do, and how it can affect us.

You have found the right place to ask, though.  this group is full of
sincere, loving and giving people, with lots of information that will be
helpful to you.

Welcome!

Mary
--just another hamster on the treadmill of life,
& lupus sufferer for almost 30 years.

> Hi,
>
[quoted text clipped - 6 lines]
>
> -- John
J - 19 Dec 2005 03:01 GMT
> I've recently started dating a wonderful woman who has lupus.  I don't know
> much, so I'm turning to you folks to guide me to good information (web
> sites, but especially books) that will help me understand her condition and
> how to support her.

Hello John and welcome.
You're welcome to post and read here to get a sense of what the others cope
with from day to day.
I would think that would help you understand.
Each person's Lupus can vary somewhat, but one of the hallmarks is usually
extreme fatigue

From personal experience, seems like a healthy person often has a difficult
time accepting the word "no" (I can't do anymore, I have to lie down and
rest).  This can mean disappointments, cancellations or delays at doing
projects, going shopping or outings to have fun. Patience and support is
appreciated. (and probably having a backup plan to keep busy doing something
else, in the meantime, while the person with Lupus rests). I find that my lupus
friends tend to minimize (and often not say how bad it is), so keep your ears
and eyes open and try to be sensitive to her unspoken needs. I hope that
doesn't make it sound like you're being unappreciated and made to "jump through
hoops" to keep the relationship going. Sometimes, that just the way it is with
Lupus. If she works (outside the home), kudos to her. Lupus can be mild or very
severe and the goal is to prevent it from becoming the latter.
I'll leave it at that for now.

The Lupus Book: A Guide For Patients And Their Families
by Daniel J. Wallace 2005 Revised Edition would probably be a good investment.

Meantime there's some reading here http://www.ghg.net/schwerpt/ASLFAQ/index.htm

And if you have questions, please ask and jump in, any time, on any thread you
wish to.
Welcome again,
J
netnews.comcast.net - 19 Dec 2005 06:07 GMT
Thank you, folks, for such a nice welcome!  :-)  You are a wonderful bunch.

The Lupus Book will arrive on Wednesday.  I'll start there, and also read
over all the posts here.

I do have a question.  Do you ever push yourself too hard?  I ask because
she's mentioned how she needs to take it easy, but she works full time with
travel, and has been quite busy due to the holidays.  I wonder if she's
overdoing it.

I guess what I'm trying to ask is does lupus prevent you from overdoing it,
or can you fight back short term and then feel the repercussions later?  I
hope this makes sense...

Any way, thanks again for getting me started.  I really appreciate your
help!

- John
J - 20 Dec 2005 01:23 GMT
> Thank you, folks, for such a nice welcome!  :-)  You are a wonderful bunch.
>
[quoted text clipped - 5 lines]
> travel, and has been quite busy due to the holidays.  I wonder if she's
> overdoing it.

Yes, well, that's not just specific to Lupus.
Some prople (general public) just do the minimum expected.
some are go-getters (type A personality).
Some push themselves to do more. The reasons might be financial or enjoying
what they do or feeling pressure to perform or worry about losing their job or
worry about flares (so do more when they feel well) (see below re
repercussions).. Pacing, I would think is key.
Environement/work pressures vary.
One place I worked longterm, there were only 5 people and the workload kept
gorwing, the more we did, the more was expected. If any of us slacked, the
whole office suffered. Taking time off for sick or holiday, just resulted in
more stress, because the pils had to be addressed upon return and more
urgently.
In that place, the first weeks i was there the boss told me he'd never hired
anyone so old.
They were all in their early 30's. I was only 40 !! But he ribbed me for 7
years about that, so that puts a lot of pressure on to prove that a person can
do as good as the young'uns and I did.
Some people put pressure on themselves for perfection even in the home.
Others are more laissez faire and don't sweat the small stuff.
Some are slackers, just like in the real world.
Some push themselves so they won't be perceived as slackers.
It varies.
Try making dates with her to slow her down. A massage, a picnic, relief from
making dinner, an afternoon at the park or library, help with the laundry,
little things every day, make a big difference,but don't enable her to push
herself harder.

> I guess what I'm trying to ask is does lupus prevent you from overdoing it,
> or can you fight back short term and then feel the repercussions later?

Yes, I think Bill answered that one.

>  I hope this makes sense...
>
> Any way, thanks again for getting me started.  I really appreciate your
> help!

Some people with lupus push themselves to the point of flares.
Others pace themselves. One friend of mine is like that. Another is the
reverse.
There's a few here like that. No matter what we say - they keep on going like
the energizer bunny.

Oh and what I see on this newsgroup, is many don't tell the worst that's
happening.
Maybe because they think others have it worse then they do and they don't want
to be perceived as whining?.
J
William R  Thompson - 19 Dec 2005 07:03 GMT
> I've recently started dating a wonderful woman who has lupus.  I don't
> know
> much, so I'm turning to you folks to guide me to good information (web
> sites, but especially books) that will help me understand her condition
> and
> how to support her.

As others have said, lupus is an autoimmune system failure.  Think of the
immune
system as the body's police department.  Most people have the honest-cop
version, where invading viruses and bacteria get busted, and the law-abiding
cells in the body are happy to see Officer Whitebloodcell walking his beat.
In lupus, you get the "1984" paranoid secret police who arrest their own
citizens,
haul them into Room 101 and work them over until they admit that 2+2=5.  So
the body becomes allergic to itself in weirdly inventive ways.  To make
matters
worse, the effects may not show up for hours or days, and the effects don't
end
as soon as the cause is removed.

Ask her about the things that can set off a lupus flare.  She'll have her
list of things
she has to avoid, but be sure to ask her about:

Sunlight.  The ultraviolet (UV) light in sunlight can set off a flare.

Fluorescent lights.  They generally produce less UV than you find in
sunlight,
but they can cause a problem for some people.

Stress.  This can be physical (too much exertion; not enough sleep) or
emotional
(a drama-queen relative).

Medications.  All medications are mildly toxic, that's what makes them work.
Sometimes lupus will over-react to the "mildly" part.

Ask her about the effects a flare has on her--fatigue?  Pain?  Skin
problems?

Think about yourself, too.  You can find ways to work around the problems,
but
it can still be stressful for you.  That won't do either of you any good, so
try to nip
the problems in the bud.

Good luck.

--Bill Thompson
Andy - 19 Dec 2005 09:50 GMT
>Hi,
>
[quoted text clipped - 4 lines]
>
>I hope you can help!  :-)

See http://www.northeastlupus.org.uk for more!
Signature

Andy Taylor [Chair, N E Lupus Group]

ofrix - 27 Dec 2005 05:51 GMT
Dear John,,

I have been diagnosed about a year ago, its tough! (30 y.o female)

Just finished reading the best Lupus book I read so far, it is written
by my doctor.

"In search of the Sun" by Peter Schur. easy to get on amazon.

Lots of love,
Ofrix
candi bowen - 30 Dec 2005 20:16 GMT
Hi Ofrix, actually, Peter Schur co-wrote the book 'In Search of the Sun'
with Henrietta Aladjem & her 1st book was 'The Sun is my Enemy' & she
founded the Lupus Foundation. She's an awesome lady. Way back when I was
'trying' to get a dx, Dr. Schur & I corresponded by mail, since I'm in
Akron, OH. I think you've got one of the best docs in the world; tell him
Candi Bowen says hi, if he remembers me. I wrote a few articles for
Henrietta's newsletter that she published, with me on my horse. My doc at
University Hosp in Cleveland, Ali Askari, says my animals have probably kept
me alive, even tho they're tons of work! But I love them. I was also dx'd at
30 & am now 49 & since I've hit menopause have been doing much better,
except for joint pain. I can live with that. Hope you feel better too.
Candi

> From: "ofrix" <zikood@gmail.com>
> Organization: http://groups.google.com
[quoted text clipped - 13 lines]
> Lots of love,
> Ofrix
 
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