Hi JamieFran,

I'm 26, female, and have had two bad lupus episodes that landed me in the hospital for weeks at a time each. I know, it sucks to have Lupus! Oh by the way, I had my gallbladder taken out though years after I felt crazy bursts of stomach pain that I thought I was going to die. I lost 15 lbs. in 10 days, couldn't hold anything down. I didn't go to the doc because I've almost lost my faith in doctors. (that stomach thing happened in december 0

I stopped taking the medicine (predinisone and plaquenil) because a: it's expensive to go back and forth to the doc and get the pills. and b: i can't take the side effects. They mess with my mind. Lupus is doing a fine job at turning my brain into mush already.

I remember when as a kid, I could remember lots of facts, now I'm lucky if I remember basic math.

Whenever I feel down....I just tell myself this isn't me. This is lupus making me feel like crap. So I lay down, take a nap, and imagine a different reality until the Lupus brain feeling like crap episode passes.

That's my best advice.

When you feel like crap, you look like crap, and worst of all nobody understands, I just close my eyes and imagine a better reality. One where I'm not sick, everything is fine. I even make a point to think about the small details of my imaginary reality. It's a good coping mechanism. Then a few hours will pass, I'll wake up and say to myself "allright, time to deal with the real world for a while."

As for alternative treatments...all I can say is, get to know your body and anticipate a bad day, hours, etc...

For me, if I wake up at 6am till about noon, I'm doing pretty good. I stay away from hot areas (heat exposure) because when I come back to a slightly lower temperature, I'll get fevers, tiredness, etc... So I just avoid heat exposure. Sometimes its not just heat exposure, it's also the change in temperature from one moment to the next. IT helps to maintain the same body temperature even if it's a few degrees. If that means wearing turtlenecks in slightly low temperature areas while everyone else is in shorts, then so be it.

By the way, there is a new lupus specific drug (the first of its kind) called Benlysta. I havent used it but it may be something to consider. I've also heard of people getting chemo for Lupus and some get cured.

The best thing I find that works is destress...control your body, your mind...Lupus calms down a bit when you're not stressed. Make time for yourself or the Lupus will.

Good luck.

err, I meant to write december 08

Hi JamieFran,
I was diagnosis with Lupus in May 1982, the end of my senior year. I know its hard to deal with but you can do it. I went to my graduation with my whole face looking like it had a scabe on it. I had laid out in the sun at a track meet and had the butterfly rash. But it was all over my face. As you can imagine everyone stared and wispered. Then right before I started college I lost all my hair on the sides. Smooth as the back of your hand. I wore a wig for a year. I have never been back in the hospital for a flare, Thank God. But I was diagnosised with cervical cancer when I was 29 and had a complete hystorectomy. I needed blood and what they gave me had a yeast infection in it. Which reaked havic on my body for 3 weeks. For my Lupus I take Prednisone and Plaquenil and imuran. My kidneys have mild damage because of the lupus and I have Arthritis in my joints. I have total knee replacement at 42. I have gained over 100 lbs since being on prednisone. I am cold alot. Sometimes in the winter I go to bed in a tee shirt under flannel PJs and put on 2 blankets and a comforter, thick socks and still feel cold. Its like the cold is to the bone or in the bone. I can be sweating and still feel cold. In the summer I keep a jacket with me everywhere I go. I dress in layers so I can pull things off when I go outside in the summer. I feel that my body thermostat doesn't work properly. People always ask are you cold at work because I will have a shirt, summer jacket and a warmup jacket on at my desk in the summer. I keep the warmup jacket at work. I know they don't understand so I just jokingly tell them that my body thermostat doesn't work. My best advice is to stay on your meds and if you don't have a personal relationship with Jesus Christ start one. I couldn't have dealt with this or the cancer without God. Once when I couldn't buy my prednisone I know GOd got me through because usually if I don't take it by 11 am I get really bad head and body aches. I went at least a couple of days without it and was OK. I prayed that God would take care of me and help me to get my meds. GOd can do for you what he has done for me. Just Pray and believe.
Judy-living with lupus for 27 years.

I was diagnosed with lupus back in 05 and the doc told me then that I was having all the symptoms and my mom still dont believe me when I tell her that the doc says that I have lupus and was explaining the situation to her and she said every once in a while people have those feelings and dont remember alot of stuff. I think she is thinking stuff is all in my head or something but the doc proved to me and my husband at the time that I had lups from a test. I dont know if she believes me or not maybe its just the lupus making me feel that way I DONT KNOW>..I just wish that I can get some help with this. I have bumps showing up every where and making me feel like I am no good to the world anymore or to anyone! I wish that I had a friend that had lupus to talk to. I feel low all the time and I just about get my hopes up to want to go to work or something and then someone else or myself just brings me out of that even though the doc told me that I am not able to work. I took myself off the meds for lupus back a year ago cause I couldnt afford the doc or the meds so if someone can help me with this please do. yall can write me. I appreciate any information that is given to me. Thanks Kaye living with lupus for about 4 years almost!!!