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yxhewc
05-14-2006, 11:07 AM
I've decided I can't just bloody sit here and do nothing while my girlfriend is in extreme pain.

I'm here to request links to major lupus research findings, and I would love it if the findings are extremely detailed.

Argh.. why isn't there something like a FOLDING@Home for Lupus research??????

SoleSinger
05-14-2006, 07:48 PM
www.lupus.org
www.butyoudontlooksick.com/the_spoon_theory
www.nlm.nih.gov/medlineplus/lupus.html
www.arthritis.org/conditions/DiseaseCenter/lupus.asp
www.acor.org/lupus
www.niams.nih.gov/hi/topics/lupus/slehandout/index.htm
www.lupusnow.org
www.lupusjie.com
www.lupus-treatments.org
www.lupusny.org
www.lupus.org.uk
www.lupusresearch.org
www.medicinenet.com/systemic_lupus/article.htm


As a start.... There are also several great books out there!

yxhewc
05-15-2006, 03:22 AM
read most of them except the spoon theory... all of them are bloody vague too. No definite answer to lupus. Wtf

Sheryl
05-15-2006, 06:38 AM
That is the most frustrating thing about lupus. There ARE no definite answers.

SoleSinger
05-15-2006, 09:38 AM
You should read the spoon theory... It describes very well what we go through on a daily basis... Maybe share it with her as well...

Saysusie
05-15-2006, 10:41 AM
yxhewc:
Is there a definate answer that you are looking for? I've noticed that we have given you many suggestions, referrals and information and none seem to be what you are looking for?
As Sheryl said, there are no cut and dry answers for lupus. That is the most baffling thing about this disease. You should know that the reason that there is no cure for or definate treatment for lupus is because there isn't one certain thing that doctors can find that causes Lupus.
I know that you want to help your girlfriend, but I can't imagine that you can be of much help to her until you understand the one basic thing about this disease: It's unpredictability and the fact that there are no straight forward, clear cut answers. You cannot say that doing this will take care of that!! It does not work that way with Lupus.
You must educated yourself about this disease with an OPEN MIND to the fact that you are not going to make Lupus or the web-sites or the information do what you think they should do. Accept Lupus for what it is: an unpredictable, lifelong, autoimmune, chronic disease that affects everyone of us in a different way!! When YOU come to terms with that, then you will be of more help to her. When you become a bit more tolerant of the issues and a bit more understanding of the disease, your girlfriend my open up to you again.
Right now, I don't think that you are helping her very much because you are not understanding the disease. You will not find one place anywhere that gives you all of the answers to Lupus. The nature of the disease itself precludes that from happening.
Read the posts on this forum (like I said, with an open mind), read the many books written about the disease, educate yourself knowing that no one anywhere has all of the answers. If that were the case, we would probably have a cure for Lupus and we do not have that yet!

Saysusie

SoleSinger
05-15-2006, 11:16 AM
The other really frustrating thing is that it is different for everyone... Something that may work for one person doesn't necessarily work for another... One person can have Lupus, go into remission, and stay there for the rest of their lives... Another person might never go into remission... While yet another, might go in and out of remissions throughout their life... And all three of these people may have the exact same type of Lupus, and may all be on the same treatments! You never really know...

Saysusie
05-15-2006, 06:06 PM
Yxhewc;
You are right, there are NO definate answers to Lupus. Lupus affects every one in a different way. Its name (SYSTEMIC LUPUS ERYTHEMATOSUS) tells us a lot about the disease:
Sstemic = means it affects every part of our body (multi-organ disease), internally and externally (cutaneous manifestations). Some of us have up to 30 symptoms while some of us may only have one or two. Some of us have almost all of our internal organs involved while some of us have no internal organs involved. Some of us can be prescribed up to 20 different medications while some of us may only have to take one or two. Some of us can participate in marathons while some of us cannot get out of our beds. And, on top of all of that..some of us who take only two medications and have no organ involvement today may find ourselves taking 20 medications and having multiple organ involvement next week. So, not only is the disease different in all of us..it even changes in each of us. So, it is unpredictable even in our day-to-day management of it. Lupus is known for relapse/remission which means that we can feel relatively good today (remission)and then can be sick as a dog tomorrow (relapse). Our relapse can be as short as a day or as long as a lifetime. Our remission can be as short as a day or as long as a lifetime...and the relapse/remission is different for each one of us! Please try to understand and accept this fact about the disease and understand that there is no single, definate answer; there is no single source of information; there is no single prescribed medication; there is no single prescribed treatment, there is no hard set of symptoms that follow a linear progression (lupus, its symptoms and treatments are all over the map). Lupus is an ever-changing illness that cannot be put in a box and explained. knowing that may help you to understand your girlfriend and also help you to support her by being informed and educated about this unpredictable disease! Some of us have systemic lupus, some of us have discoidal lupus, some of us have lupus nephritis, some of us have cutaneous lupus (I could go on) ... But, we all have LUPUS!
Peace and BLessings
Saysusie

yxhewc
05-16-2006, 07:24 AM
Hmm... I did notice a trend in things though. At least that is definite.

I met a few people (well, about 20 of them) in my personal research on lupus, and I found that patients with positive thinking stay in remission longer (2 of them I know never had a flare for over 10 years already)...

Thanks a lot for your replies guys

SoleSinger
05-16-2006, 09:44 AM
It helps a lot! Less stress is better in autoimmune diseases... But, it's still not a guarentee... And THAT is frustrating... I used to know someone who had probably one of the best outlooks on life EVER! But, she was WAAAYYY sick... And really no amount of positive thinking was going to help her... But, she tried!!! :D And it DEFINITELY doesn't hurt...

yxhewc
05-16-2006, 09:58 AM
Ok... you're scaring me now solesinger.... :o

Saysusie
05-16-2006, 10:24 AM
She was really not trying to scare you. She was being realistic. Two words you need to keep in mind.."Unpredictable" and "Unknown".
If you are able to talk to her, try not to be so forceful. Try just listening...don't interrupt, don't ask questions, don't offer opinions, don't make suggestions, don't tell her how she "SHOULD" do anything. Just quietly and intently listen to her and when she is finished talking, ask only one question..."What can I do to make things easier for you?" and then, do only what she asks you to do. Don't pry into her doctor's visits or her test results. When she has more confidence in you, she will begin to share those things with you. Right now, I suspect that she doesn't have enough confidence in you to just hear her without doing or saying and to just support her without questioning and prying. It sounds as if you are giving her added stress and she does not want (nor need) that. Slow down, back up, take a deep breath and be what SHE needs you to be, not what you think you ought to be!
Forgive me for being so blunt with you and for getting so personal, but she is ill and, like you, we all want her to be able to manage this disease and live a relatively normal life.


Saysusie

SoleSinger
05-16-2006, 11:54 AM
Thanks SaySusie... I know sometimes the way I say things doesn't come out quite the right way... :? Glad to know this wasn't one of those cases... :)

yxhewc
05-16-2006, 12:07 PM
She was really not trying to scare you. She was being realistic. Two words you need to keep in mind.."Unpredictable" and "Unknown".
If you are able to talk to her, try not to be so forceful. Try just listening...don't interrupt, don't ask questions, don't offer opinions, don't make suggestions, don't tell her how she "SHOULD" do anything. Just quietly and intently listen to her and when she is finished talking, ask only one question..."What can I do to make things easier for you?" and then, do only what she asks you to do. Don't pry into her doctor's visits or her test results. When she has more confidence in you, she will begin to share those things with you. Right now, I suspect that she doesn't have enough confidence in you to just hear her without doing or saying and to just support her without questioning and prying. It sounds as if you are giving her added stress and she does not want (nor need) that. Slow down, back up, take a deep breath and be what SHE needs you to be, not what you think you ought to be!
Forgive me for being so blunt with you and for getting so personal, but she is ill and, like you, we all want her to be able to manage this disease and live a relatively normal life.


Saysusie

O_o... thanks for the reminder.. I've been kinda obsessive over her lately, wanting her to see the best doc etc etc

Saysusie
05-17-2006, 02:31 PM
:lol:
We are here for you and for her!!

Saysusie

SoleSinger
05-18-2006, 12:27 AM
Here's some more...

http://www.businessweek.com/ap/financialnews/D8HGV2P00.htm?campaign_id=apn_home_down&chan=db

Lupus Foundation of America Will Recognize Extraordinary Efforts to Combat Low Profile, High Impact Disease
http://biz.yahoo.com/prnews/060502/dctu086.html?.v=2

ImmuPharma announces successful results from its phase I clinical trial with IPP-201101 for Lupus
http://www.medadnews.com/News/Index.cfm?articleid=339470

Living with lupus
http://www.niagara-gazette.com/features/gnnlifestyle_story_122093233.html?keyword=topstory
(love this quote: "The only quality of lupus that is predictable is its unpredictability.")

Morpheus
05-19-2006, 06:59 AM
I have found these sites to be extremely useful.

especially the canadian site which lets you download an electronic book for free(great book)


http://arthritis.about.com/od/lupus/
http://lupuscanada.brinkster.net/en/lupus_book.html

SoleSinger
05-26-2006, 11:41 PM
http://www.hopkins-arthritis.org/other/lupus.html

Here's another!!