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Old 03-29-2006, 03:53 PM   #1
helen lamb
Join Date: Mar 2006
Location: lumberton, n.c.
Posts: 1
helen lamb HB User
Smile lupus

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

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Old 03-29-2006, 08:39 PM   #2
Join Date: Apr 2005
Location: Beautiful West Virginia
Posts: 27
Langoley HB User
Re: lupus

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!
Best of luck

Old 03-29-2006, 09:28 PM   #3
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Join Date: Feb 2004
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Re: lupus

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.

Hang in there! With best wishes, Vee

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