Hi,
My name is Helen and I have lupus, i'd like to find out how others deal with
it, and all the other things that come with it. Looking forward to hearing from
you.

Hello Helen, I've had Lupus myself for about 20 years now and I guess I deal with it just as best as I can. I try to take things one day (sometimes one hour) at a time! ;) It can be very difficult at times. It's helpful to have an understanding family that supports you when you have good times as well as bad times. I try to keep myself as active as I can with my treadmill and a couple of exercise videos that keep my range of motion going; but, I'll admit these last couple of years have been kinda rough for me. I had a good spell for about 10 years or so and just last couple of years got bad again. I have recently begun Imuran treatment along with the Plaquenil and Prednisone as well as a basket full of meds LOL :)
I do a lot of reading as I enjoy getting into the plots of novels. I think it kinda keeps my mind busy and off of my own life for awhile. I have 2 dogs and that helps too. We also have 7 horses and 2 donkeys. They can be real helpful on boosting my mood and always seem to know when I do not feel well. When I do feel good, spending time with them is a great thing for me. But, when I'm bad, it's great because they don't judge, or care how bad I look. They don't make me feel worse or ask me a bunch of questions I don't feel like asking.

Anyway, I don't know if this helped you in any way but, just thought I'd respond and let you know how I try and cope! :wave:
Best of luck
Dee

Hi, Helen, and welcome to you. I was Dx'ed with the SCLE subset in summer 2000. I take Plaquenil, and it's helped a lot after decades of serial & widely varied problems. I'm very photosensitive and have to be very careful outdoors (bah!).

While I love to read "serious" books, I also actively seek humor in friends, books, movies, etc. I'm a doggie lover, too: we have a clownish terrier who adds a lot of laughter to the household. I gave up high-impact exercise about 10 years ago & switched to floor Pilates. I have to force myself some days, but I find not moving is worse.

Coping is hard & I do have blue spells... I try to limit the amount of time I allow myself to feel bad. I'm a big fan of the Board here and find it helps hearing the voices of others. I did go to a local group for awhile. But here, it's utterly democratic, full of goodwill, no jockeying for titles or position.

I'm better at saying NO than I used to be. I was brought up to work hard & not be idle. Having to redefine yourself & learn new ways to feel reasonably good about yourself... well, it's certainly an ongoing process---and necessary! I mutter "EVER ONWARD!" a lot. :D

Hang in there! With best wishes, Vee