I also didn't know if anyone has recommendations for me. Accupuncture has really helped me although its kind of expensive. Any tips on diet, exercise, clothing specifically hate, skin care products? (I have both kinds of lupus). Also, how do you explain why you are completely covered up in the summer, most people dont understand it when I explain the disease. Right now we are hit and miss trying stuff out. I would love to meet with a support group locally too but I dont know how to find one.

Thank you so much! Jessica

I've had lupus for l5 years and still have to be careful that I don't overdue. I do exercise but I limit myself, if I feel a little better I do 40 minutes of my gazelle and if I don't feel as good I do maybe 20 minutes a day you will learn how much you can and cannot do. Skin care products, its important to wear even on cloudy days sunblock. I use the neutrogena 70 and now they have an 80. I can't be in the sun at all so I just put the sunblock on my face even if I don't leave my house. I do go shopping but I have to limit myself on how long I can be under the lights. I go outside just when the sun is going down and its the best part of the day especially during the summer time. This is a great site to learn about the illness from people who are living it. I also bought some really good books and learned quite alot. Since you have this illness it would be good to get one or two books and have your husband read them to just so both of you can understand the disease as for people some people get it and some don't. Some of my friends don't quite get it and I don't explain it to them. Maybe check online for the nearest support group in your area. I sure hope this helped you. Take Care

Eva

I totaly understand your issue with the excercise and having been active. I agree with Eva. You will figure out in time, what your limits are. Just remember, even on a good day- take it slow.

With clothing, I wear a thin, white, longsleeve, top outside. I always pretty much wear pants, sometimes I do okay with capris.

When anyone says anything to me about wearing too much clothing on hot days- I just simply tell them, "Due to a medical condition, I'm not really supposed to even be in the sun". Most people just let it be. Some will ask, but not many. It seems that now-a-days (unfortunately) most people are more involved in themselves, and don't want to know or care about others. So usually a simple statement is all they need. If they really care- they will ask more about the disease. Don't worry about them "getting it" or not. I guarantee you, if they don't understand- they will go home and get on the internet and research on their own.

Definitely always wear sunscreen. Good to do inside and out.

Eva- Thanks for letting us know that Neutrogena now has an 80! That's great!

Hang in there. You will learn to cope with this horrible disease.

Amy

Eva

First of all- thanks for saying I'm doing a great job in being a group leader. That really makes me feel good.

Next- As far as the sun- well, I'm not as sensitive as you are. That's for sure. I try to avoid the sun totally. I too wear sunscreen lotion and make-up with sunscreen in it. Then cover my body with sunscreen. I know it sounds strange (but I'm sure you'll understand), it's like I can feel the sun clear through my clothes.

When I am in the sun, it is only for a few minutes at a time. Like you, watering flowers and such. Once, a few years back, I was in it for like 30 minutes. I tried to sit out a softball game of my daughter's. I broke out horribly all over my body, and became very sick.

My mom was very much like you. She could just step outside for a couple of minutes, come back in, and have a really bad rash. She would wear long sleeves, long pants, and even a large brimmed hat. (Oh, the hat collection she had.) She still would break out within a matter of minutes.

I guess that I learned from her what the sun can do to people with Lupus. Therefore, when I was told I have Lupus- I just avoid it.

So, in answer to your question with the limit of sun. Well.... I guess I'm not exactly sure. But, not long.

I miss out on a lot because of that. I spend a lot of time inside, until the sun is almost down.

Oh- I can be in the sun a little longer when it's not as "hot", like in the winter. But who wants to be out in the winter?

Amy