just some quwstions

[jasonmac]

Hello my name is Jason and my girlfriend Bethany has Lupus and I'm trying to learn all I can about this disease, in order to understant her to the fullest. I love her with all my heart and I want to learn the dos and don'ts with this disease. I also want to be able to be there for her and I don't feel like I can 100% if I don't know everthing about this. If anybody has any helpful information or just wants to talk about this please help me out.
Thank you

[sunladyb]

:wave: Jason and :welcome:

Betheny is a very lucky lady to have someone like you who wants to learn and understand what this illness is like and you are very welcome here.
It is very hard to understand what is going on and just being there and supporting her is wonderful.
As you have probably found out that there is no point in making plans to do something in a weeks time :( as when day comes she is probably not up to going out.
Which lupus does she have? where do you live?

the 2 things i have learned
1. sun is the enemy
2. Stress = pain
How does lupus effect her?
Take care
Love
Dawn

[HelenS]

hi, i also have a lupie "must do" list for you :P

1. get lots of rest
2. learn its ok to ask for help
3. no alcohol with certain meds
4. exercise in moderation
5. no tanning beds
6. use sunscreen year round
7. keep all drs appointments
8. write down any questions or concerns you have for next dr appt
9. get lots of hugs from boyfriend

exhaustion is a common problem with lupies, this is something that is very hard to deal with (for me anyway). learning to pace myself, and getting lots of sleep has really helped. we lupies are very bad for over doing things and then paying for it later. my husband is very good to remind me to stop what i am doing (gardening or housework) and rest or just stop and have a break with a cup of tea.

luv helenxxx

[alobreto]

Welcome, Jason! ;)
If you haven't already browsed a bit here, I recommend it. There is a lot of information on this forum.

As you look around and read the posts, try to keep in mind that there are many people with lupus who are NOT represented here because they are too busy leading normal lives to be able to post. They don't come here, because their illness is controlled and they don't need the kind of support a forum like this provides.

I wish you and your girlfriend the best!
Regards,
Angela :flowers:

[joannahelena]

Originally posted by jasonmac@Aug 26 2005, 10:00 AM
Hello my name is Jason and my girlfriend Bethany has Lupus and I'm trying to learn all I can about this disease, in order to understant her to the fullest. I love her with all my heart and I want to learn the dos and don'ts with this disease. I also want to be able to be there for her and I don't feel like I can 100% if I don't know everthing about this. If anybody has any helpful information or just wants to talk about this please help me out.
Thank you
Hi Jason,
My advice to you is BE PATIENT with her. Give her respect and understanding and let her deal with lupus in her own way. Above all give her loadsa hugs!!!! :hugbetter:

[loz82]

Hi jason :wave:

id not been going out long with my boyfriend when i got diagnosed with sle,
he has been great, letting me get on with things but always being there for me, reminding me to get in the shade etc and telling me to calm down when i get stressed.

Hes said he will come with me to any appointments (weve been together 5 months nearly) and he came with me when i had my biopsys done the other week (one in my head and on my arm).

like someone said earlier it depends what type she has but all the best

loz
x

[nicole7]

Hi Jason
Wow, what a great boyfriend you must be to be so concerned and involved in Bethany's health. I find that very touching and am happy that Bethany will have such great support from you.
N

[jude mack]

Hi Jason

Welcome to the site, your girlfriend is a lucky lady. And you have go to be a
great guy to want to learn all you can about Lupus. You have been given good
advise and I 'm sure you will learn alot from others on the forum. Take care of
yourself and prayers to your girlfriend. Jude :shake:

[hobomelody]

Dear Jason,

I have found out stress can kill you
eat lots of veggies because meat will inflam the joints and cause more stifness.
understand that somedays the only thing she cab do is stay in bed
weight gain is possible and depression is very common.
When and if she sounds like she is complaining alot sometime she just wants to tell you she is in pain just be patiant and understanding and thing will work out. I don't know how old you are or if your able but if you can take a stress free vacation IE a nice little cottage somewhere no one can bother you and you don't feel like you have to get up and go do something. When you are at home their is always something to do but if your not just go for a walk but the ocean or park or woods hold hands and let the world go away. Best of luck. Hobo