100 lb. Club - Lupus




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missaprylj
09-18-2002, 12:13 AM
My oldest older sister (she's 26 and actually my half-sister, but that's NEVER mattered to me.) has been told by her doctor that she might have Systematic Lupus (more tests are to be done soon).... :(:(:(:( I'm so sad... I'm also having a really hard time finding information on it. She has BAD wrist pain I guess... can anyone tell me anything about it? Or at least pray if you believe. Thanks. Peace. -Apryl


DNW
09-18-2002, 12:37 AM
Do a search on Systemic Lupus on the google or alta vista search engines and see what you come up with. also the national lupus foundation should have their own site. Good luck and let me know how you make out.

nasus40
09-18-2002, 08:09 AM
Prayers are out to you and your sister! Lupus is a difficult disease. but one can live a long life with it. so do not get too despondent. it is an auto imune disorder that the body starts to attack it's self usualy in the joints. (frequently treated with steroids during the active stages) yes it is painful and there are many other things attatched to it. but ateast she is diagnosed and let the docs take good care of her find a online support group for her. unelss you live ina big city. there probably is not one near by.

just be aware with the steroids there usually is a short term weight gain caused by fluid retention some times there is mood changes (snappy) so just be aware of these things when she is having her treatments and beare with her please. she is in pain and that is enough to make her grumpy!!


lorelei1
09-18-2002, 09:00 AM
Apryl,
I said a prayer for your sis. I hope she doesnt have Lupus, but like Nasus said it is something you can live with. I know a woman who has had it for years and years. Sometimes she has problems in one part of the body, then that goes away, then it seems another part is the problem. I would also recommend checking the internet for info like on www.webmd.com or www.drkoop.com or just go to www.ask.com these always seem to work for me.
God Bless!!
laura

BA99TJ
09-18-2002, 11:25 AM
Apryl - your sister is in my prayers! You CAN live with lupus which is good, but its not exactly fun.

muelledk
09-18-2002, 06:44 PM
Apryl,
Your family is in my prayers. I have a very dear friend who has lupas, and she has not let it control her life. She has been able to maintain an healthy, normal life, she is happily married, and has a wonderful family.
Try looking at webmd. I'm sure that there is a plethera (sp?) of information out there.

missaprylj
09-18-2002, 08:52 PM
Thank you all so much.... you just become more and more like family every day. Peace + Love--- Apryl

jiffypop
09-18-2002, 09:23 PM
like the others said, it's a tough disease, but it's one you live with. it's manageable. but your sister will really have to be on her toes with proper exercise, rest, diet, medication.

and i can't add anything really to those resources that everyone suggested. but we're here and ready to help...

hugs and prayers.

jiffypop
09-18-2002, 09:36 PM
it's the researcher and writer in me...

here's a great pile of info for you at:
http://www.niams.nih.gov/hi/topics/lupus/slehandout/index.htm

the beginning is a bit scary, and i wish they had put the section quality of life at the beginning, but they didn't. they also provide a lot of links to organizations with support groups.

i'll go check for more places... back in a few.

also check out www.lupus.org. they have lots of information and links to the state chapters, including the one in wisconsin, in west allis [not like i have a CLUE to where that is!!!!]

nasus40
09-18-2002, 10:47 PM
I will say that i have and usualy see the bad side of things as my experiences are from the hospital side. I tend to see diseases with the eye of the one who sees the bad end. I am so glad that there are many resources for you to search and find!!!

gbo
09-19-2002, 12:52 AM
The Mayo Clinic and webmd also has a good bit of information on Lupus. Thankfully there are many good medications and resources for Lupus. Still no disease is easy to deal with but Thank God it is so treatable. God willing one day soon all the immune diseases will be cured. Take heart Babe. It is so scary to have someone tell you , you have a disease or even might have one. I almost fainted and I didn't even know what MS was! The more you learn about it the less scary it is. You soon learn what to do and not do what your weakness are and your strengths. She will get a handle on it if that is the problem. Wait and see if Lupus is the final diagnosis. Moral support is so important during those times. Not to be treated like an invalid but as a person who has to make a change in life. Such as Lupus people as are MS people are heat sensitive and certain medications can make that even more a problem so there are adjustments you make to compensated and things you buy to keep your body temperature down. There are many things on the market that will not bankrupt you to assist when needed. See what I mean adjustment. Each person finds a way to have a full life after the shock wear off! Just let her know you love her and let her talk it all out. I send blessing and prayers.
Pam

SusanTaw
09-20-2002, 04:37 PM
Apryl...let me know if you need any
info on Lupus. I have been living with
Lupus since my early 20s. There is no
cure, and the disease affects different
parts of its victims bodies...joints, the
heart, the liver, the blood..etc. and
sometimes several organs at the same
time. However, it can be controlled
and go into remission. Then it can
flare up again. We try to always have
hope and learn to live with it. However,
it is important that your sister learn as
much as she can about the disease,
and how it affects her and to get the
proper treatment, because Lupus can
and does kill. I don't want to scare
you, just warn you. I wish you and
your sister all the best.

nasus40
09-20-2002, 09:45 PM
Susan HI!!! Just wondering what you were up to!!!