View Full Version : I haven't posted in a while

03-04-2007, 03:57 PM
Hi everyone! I haven't posted in about 6 months. I think I've been in denial about lupus...I still don't have a diagnosis...so when my symptoms lighten up (they never fully go away) then I start to think that all of this lupus stuff is in my head. Then...we have had some nice spring-like days here in south Louisiana, and I have been out in the sun with the kids...and WHAM! It starts all over again. Fatigue, headaches, joint pain, butterfly rash. It is very depressing! I have made and canceled MANY appointments to the rehumy over the past 4 years...I'm not sure why. I guess I just need some encouragement or at least a little dose of reality! I don't want to think I'll be sick forever. :(

03-04-2007, 04:20 PM
Unfortunately, having your symptoms come back after being out in the sun sounds a lot like lupus - many of us are very photosensitive and even a little UV exposure can trigger a flare. So it's really important if you are photosensitive to protect yourself from sun by wearing sunscreen religously and protecting yourself with a broad-brimmed, tightly woven hat when you are outside. Long sleeves are best but I can understand that might be a problem in New Orleans in summer - it's hot! You can also buy clothes with special UV protectant built in, and special UV blocking film to protect your car windows. Wearing sunscreen and hats all the time can be a pain, but it's better than risking a flare everytime you go outside.

I understand the frustration of not wanting to have this disease, but living in the state of denial doesn't work forever, as I'm sure you've found. Please make your appointment and follow through! Right now, lupus can't be cured, but it can be managed. I know you want to be healthy for your children and working with your doctor is the best way to do it.

03-05-2007, 01:22 PM
Thanks MaryCain for the response.
I guess I am feeling ultra scared. It's been very convenient to cancel/postpone dr appointments lately...since Katrina, MANY doctors have left town. Alot of doctors who stayed are either not accepting new patients and those that are accepting patients have waiting lists that are MONTHS long. It's made it really easy for me to put it off. :!: I never think about the disease until I have symptoms (like now)...when I first came down with symptoms, my doctor attributed it to Fifths Disease and told me not to worry. That was almost 4 years ago! I guess you could say I am in the transitional phase between thinking it MIGHT be Fifths Disease and accepting that it MIGHT be Lupus. I had an aunt that died of Lupus complications in the 1970's, so I DO have the hereditary factor.
Does the butterfly rash across the nose and cheeks HAVE to be VERY red and pronounced (like in all the pictures you see) or can it be light (kind of like a mild sunbun) Mine is ALWAYS there and it looks like I have a mild sunburn when I'm not wearing makeup. I have NEVER had the VERY red rash like in the pictures. I am very sensitive to the sun...sometimes worse than others. It makes me sick (achey, tired, flu like) when I say tired I mean EXHAUSTED!!
I also have the neurological/nervous symptoms...ie anxiety disorder.
ARGUHHHHHHH! The more I type the more frustrated I get. I am afraid of this!! :cry:

03-05-2007, 01:38 PM
I think how much the rash shows up depends a lot on your skin tone - I've seen women with very light skin who have a very conspicious rash - my natural skin tone is a reddish tan anyway, so for me it looks more like a fever flush than a rash. People who have discoid lesions often have a raised bumpy rash - other people have the sunburn look. So it can vary a lot from person to person.