I want to thank you all for your replys, I know I am not suppose to be in the sun but I did not understand just how bad it can be, I always us and umbrella and a hat and of course sun screen, I could not use the umbrella at the game of course, but tried to take other measures, I guess I really don't take this lupus as serious as I should and I think that has to do with myself not really caring that much, as I am not a young woman anymore and just do not care, that may sound selfish but I have raised my family, and lived a very good life up until the last 10 years or so. Also my hubby does not get it either and most of my children just don't want to here it. Some don't believe there is anything is wrong with me and others are great, but I don't think any of us get the whole picture. Again TY I think I needed a wake up call and you gave me one hell of a good one lol you are spunky bunch. tytytyt,

I'm glad I saw this thread because I, too, tend to take things less seriously when I've been feeling better. Lately, I've been feeling almost like a normal person and think I can do anything again until this weekend when I majorly overdid it working on my house renovations and have spent the week in bed because of it. I tend to do the same with the sun and think a little bit is okay because I've been feeling so well and it's not making me feel AS sick as it has before. Hello denial...

Bunny, like you, I think one of my biggest problems is dealing with the fact that my family and friends don't get it. I think I really do get it, at least in my head, but I don't want to believe it because I want to live as normally as possible and I don't want to be JUDGED or put a wrench in anyone else's plans or expectations. They just tend to roll their eyes if I say I can't go out in the sun for just a little while. They don't get it that sunscreen isn't enough protection and that it can make us sick internally, not just cause rashes.

I just need to get better at not caring what other people think of me, which is the hardest part!

Sigh, these posts bring me to tears because I have been in the sun too much--at the pool, swim meets, baseball games, etc....I am no longer able to work and for some reason I feel best when it is warm....so I venture out. I know it's crazy and terrible but I do try to be careful. I have an spf umbrella and always wear protection. I know I shouldn't be in the sun even for a little bit, I "get it" as you all say....but as a mother how am I supposed to function inside all the time? My kids play sports, I love to garden, the beach, I cry as I write this....my life is outside. Sigh....I'm sorry....I'm not going to be able to continue with this post, this is just too upsetting for me. I understand the consequences but I also know I could go outside and get hit by a bus or choke on an olive at a restaurant. I know it's crazy talk to say the things I'm saying, but I can't shut myself inside without a trip to a mental ward. This is all just too much and I'm' sorry for not finishing my train of thought.

I am sorry you where made to feel so guilty teeniemck. This should not happen on this board. People should not shove there opinions down our throats. I know what u mean and as long as you are using good protection and your proper umbrella you go out and watch and play with your kids. Stay away from the sun between ten and four though. Hugs and don't feel bad it is your choice. hugs marilyn

Teen,

It breaks my heart to read your post. I completely understand and feel the same way. I have two boys ages 11 and almost 9, my life was completely stopped for 6 months and now is slowly starting again. BUT I will never be able to enjoy the sun or fun outside anymore unless I go into remission. Now I am severely anemic I have been anemic for over a year but now my rheumy is extremely concerned. It seems like it is always something. When we have more than one AI it seems like one or all have to act up. I am sick and tired of being sick and tired. I am sick of complaining but it seems like when one problem is helped another goes out of control. I am always under water with something holding me down. I was always so happy and full of life and this disease or diseases have sucked all that optimism out of me. I am no longer the kind, thoughtful, sweet person I was. I used to always see the good in people and now I see the bad. I am angry, sad and lonely.

Hi there everyone. I apologize for my hopeless post last night, I just got really down in the dumps again (which happens easily) when I feel overwhelmed by the enormity of my health issues. I am often reminded of it (like you all too) when I overdo it or spend too much time "enjoying life". Sigh....I am a very outgoing and optimistic person, I even got involved in the lupus foundation and have raised a great deal of money this past year for our cause. It helps to do something positive, to stay focused on the joys in life, but sometimes I get sucked in. I look at the positive, and sometimes with lupus there isn't much positive when it comes to losing a part of your life that brings you such joy. You see, if I had it my way I'd never be inside. We have a beach house, we hike, we bike, we play sports, we watch sporting events, and on and on it goes. I am careful to limit the time I spend in the direct sun, and the times of the day that I'm out, but I know all too well that I spend too much time in it overall. I'm torn because the summer months are when I feel my best, for some reason the warm heat is so kind to my joints. Cold damp weather is horrible for me, however, those are the months that the sun isn't my enemy and I am completely content to shut myself indoors more. The sunny nice months of the year are my nemesis. I'm supposed to avoid it, yet the warmth and humidity break me from the chains of the horrid symptoms I have other months of the year. I know it's wrong but I still can't bring myself to shut in and avoid the sun alltogether. I'm going to take my rheumy's advice and do everything I can to cover up, seek shade, load up on spf, and avoid the hottest part of the day. I'm so sorry also if I upset any of you with my post, it's just that I was at the pool with the kids (under an overhang for most of it) with my umbrella (which I call mary poppins, lol) all day and knew it wasn't the best choice. But it was fun, the day brought me joy, and got me out of my lupus funk....such a catch 22 for all of us I'm sure. We need to get out to keep our sanity, yet when we do we suffer tremendous guilt or consequences healthwise, or both...sigh.....



I really do hope one of these days remission or a cure are in our forecast.

My heart goes out to you. Even though I have a stranger type of lupus (tumid) that only affects the skin and the sun makes me break out in an itchy rash, I understand what you are going through. I realize that mine is not systemic or discoid and for that I am grateful.
I hope you will have a good week-end and will be very careful outside.
I know you know all that and I understand that its so hard sometimes especially with children and a family and things going on in the summer.
Take care of yourself and remember that you are in my thoughts.
Virginia