Attitude is a choice and I choose to seek the positive side of chronic illness. Rather than resist it with anger or give in to it through self-pity, I made the decision to learn from this disease. Certainly there are times when depression closes in on me, but through good friends I pull myself out right away. I know as I struggle to maintain a positive perspective, I grow stronger and wiser. I always remember that my disease could have been worse, which makes me grateful for the health I have.

My experience with professional health care has been unsatisfactoy and the physicians I have consulted have not been well-educated in SLE. Whether from lack of understanding or lack of acceptance, my family isn't very supportive. I believe it is due to the fact that they have always been so accustomed to my high-energy and motivation, which has suddenly ceased. Maybe they just forget, but I get tired of having to say, "no" and reminding them that I just can't do all the things I once could. The one thing I would most like to express to my family is that I am NOT a couch potato out of choice. Lupus affects my physical strength and robs my energy, and there are some things I simply cannot do just because they want me to.

I agree with your philosophies, Gayla. I have always been a very independent person and do my best to remain so as much as possible. I was once a nurse, a plumber, and an electrician. I could tear apart a car and put it together. I've drawn blue prints and built homes. In comparison to those accomplishment, I now feel useless a lot of the time. Yet, instead of moaning the losses, I have chosen -- and it is a choice -- to expand into other things I can still do.

I teach others to do for themselves. I volunteer. I focus on reading, learning languages, learning new and interesting things. I now focus on my art. I was such a helper -- physically doing for others -- but now I help them in other ways. My arms get so weak sometimes brushing my hair is difficult, so I keep it cut short. I use every gadget I can find or create to help me do activities of daily living by myself. Since my husband works out of town so much of the time, I HAVE to do things by myself. (Not that I would ever want it any other way. I've always been independent. haha)

I do very well most of the time and I think most of that is due to attitude. Yes, I too have days when even thinking about getting out of bed or going down stairs is too much to even consider. Sometimes -- because I have no children -- I stay in bed and treat myself to a day of reading or sleeping. I believe my body has more wisdom than I and so listen to it whenever I can. Today my hands are swollen and stiff, my joints have that random attack plan of pain going on, and my abdomin has some sore spots. My neck hurts, and I have pain I have had so constantly that I consider it all normal and don't even notice any more. I do what I can in spite of it. I take my medications and push on. What else can you do?

The one thing all lupus patients need to accept is that only another sufferer can understand what this disease is like. We have to stop expecting others to understand and stop getting angry when they don't. I have friends that just don't get it at all, but other loved ones understand. I try to educate the ignorant -- if they want to understand. I have learned how to take care of myself and NOT are what others think. THAT has been one of the most useful and rewarding things I have learned so far---taking care of me and letting others think what they want. I am so glad there are sites like yours. This disease attacks body, mind, and soul -- if you let it. It takes all of us to help each other through it. We need to know our experiences are not weird or unusual... Like feet burning. ARGH! I hate that. (haha) I thought it was just me until I spoke to other sufferers who endured the same thing.

Keep up the good work. Your page is very well done and I'll be back to it. If it's okay I'll put a link to it from my page. Others need to know about it.