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Featured Discussion Lupus
We Hear You!
Well, the surveys were slow again this week. We really need you to help us out by completing them - kinda hard to address issues when you don't know what it is everybody wants to know.
I'm trying to decide if there's just not that many of you with Lupus - you don't think it's important to fill them out - or you just don't like messing with surveys.
If you don't think what you have to say matters - you're wrong - this is your site, and we want to make sure you're getting everything out of it that you need. We live for questions, comments and constructive criticism, and we've got newbies out there that really need those tips from those of you that have been there.
If you have Lupus and you haven't completed this week's survey, please take a moment to fill one out - your comments just might be what someone out there needs to hear to make their day a little bit easier.
Okay, here's what we've heard so far. When asked what bothers you most about having Lupus:
"...Scalp....hair loss...fatigue...skin rash.."
"...Not knowing if my lupus will become life threating, not knowing if I can make plans for the future, or if I will be here for a future. Also having to stay out of the sun, I'm an outdoors person. Something I never expected to happen, vision loss, is very difficult for me, I'm an avid reader, I also love needlepoint(which is now part of my past) and photography. I still do gardning but I try to stick to rainy days to do it..."
Sound Familiar? On the topic of controlling the disease one member said:
"...My lupus seems to be under control as long as I stay out of the sun, my flares are brought under control easily with sterods. But the secondary sjogren's is another story, sometimes I think I'll lose my mind with eye pain, vision loss, sinus pain, sore throat, nothing that anyone does helps, including lots of eye drops, plugs, etc..."
And when it comes to tips and general comments - here's what you had to say:
"...Have a support group! If not with family, find a lupus support group in your area. Having someone to talk to helps with the stress of having the disease."
"..Keep your sense of humor. (kinda general, I know, but otherwise it will kill you)."
"...Don't get isolated it leads to depression, and let others help, two lessions I had to learn the hard way. Since I have a lot of joint pain, I found the joint conservation tip from physical therapy very helpful. For example,asking the clerks at the grocery store not to put too many items in one bag, using reachers to get things out of shelves."
"...The hardest part is trying to explain to people about the exhaustion, the general "not feeling well", and the physical limitations due to a disease that is not all that visible."
"...I'm one of those lucky people who lives close enough to Philly to see Dr. Hoch as my rheumatolgist. She is a wonderful person,I don't know how she volunteers for us after shes done at her office, which is always busy and the last time I was there without air conditioning. Thanks Dr. Susan."
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