Hello and welcome Dave,
You're in the right place. Family, friends, partners and caregivers are here
too.
When you get time, peruse the FAQ.  http://www.ghg.net/schwerpt/ASLFAQ/
or http://www.northeastlupus.org.uk/katfaq

Also reading the posts should enlighten you.
Hop on into a thread anytime if you have questions or comments or a CGT
(cheesy good thing) to share.
We talk about all kinds of things here
Best,
J

[

You've come to the right place!

Hi Dave,
You are in the right place. You will learn all sorts of things here. So many
here manage to live well, and make the best of things. Reading about our
problems and triumphs should be helpful to you. You are welcome to ask
anything.
BJ-Sk. Canada

Hello Dave,

Welcome to our humble abode. (uh..NPI)

There are a lot of great folks here, a lot of well-informed folks and if we
don't know the answer we can often at least point you in the right
direction.

(no really, those were my thoughts, not taken from your post)

Honestly, for all the pain and aggravation I have dealt with WRT lupus, I
think in some ways it is harder on my hubby.  At least I have something
tangible to say is "wrong" while for him, trying to understand what I'm
experiencing and remain upbeat and supportive is perhaps his greatest task.
He does very well. At first there were some issues because he was certain
that exercise and better diet would fix everything.  Or if he just pampered
me more or something.  Granted - those things *help*  - especially the
pampering bit. :-)  Or at least, that's what I tell him.

seriously though - I put a couple of books about lupus in the "reading room"
and this was before we really knew what was going on.  It helped both of us
understand better and it helped him see that what I was going through was
very real.  He has gotten me through some very rough patches for which I am
very grateful.

I make it sound like a major struggle and at times it is - but I think over
time you adjust somewhat to the capriciousness of the disease.  You and your
SO learn the patient's limits and if you are good communicators than you're
likely to also learn things to do together that do not impact disease.
Examples: Hubby has set the 3-stop rule I mention above.  That's how many
places we can go in one day.  And for fun - we both love working on our home
business which is an indoor job, we like to fish and night fishing or early
a.m. fishing are fine with us.  I (re)took up amateur astronomy after a few
years hiatus - doing this at night of course means no UV exposure.  and so
on.

anyway - you are to be commended for your interest in the disease and your
desire to be supportive to your friend.  There are some good resources out
there. Any of the major lupus organizations can provide you with info of
course.  There are links in the ASL FAQ* for organizations in the US, UK,
Canada and a host of other countries.  And of course, our little FAQ has a
lot of info and links to info so do check it out when you have a moment.

Best wishes and again, welcome to the group.  I hope we can be of help to
you.

kcat
* http://www.ghg.net/schwerpt/ASLFAQ/

Welcome to the group David.

Sherry

Welcome to the group. I think the hardest thing about this disease it
figuring it out. Just when you think you have a handle on it - well, you get
thrown a curve ball. Also what happens/ affects to one person may not ever
happen to another. Read the FAQ's (KCat) and that will help. Ask any
question sand we will try to help you. Often you will find there are a few
who have BTDT and that can be extremely helpful.
Bev

Rhonda:

www.casselman.net  :)

Hi Grace:

Yes, I noticed too.  I'm sorry you had to spend so much time in the
hospital.  You're in my prayers, Grace...

Maggie