Lupus Support Group

I just found out that I have SLE lupus...just wanting to know what i should expect and some dos and don'ts

Angelena,

Wow what a bad time huh? I know you must be scared but you came to the right place. I know plenty of people will post.

I know for me I make sure I right everything down. From what the doctors say, to what tests I'm doing and so on. I make sure I get plenty of rest and try so hard to avoid stress.

I listen to my body (it took six years).

I try to find joy in the little things.

Hang in there, we are here for you!!!

Gen

Angelena, Hope you are doing OK. You will find all the support you need here, and info and advice, plus virtual hugs. I just found out I have lupus in Dec. and sometimes I am still in shock. My flares come and go. Try to identify your triggers and take good care of yourself. Ask anything and everything and I know you will get many people responding - it helps a lot just to know you are not alone. XOX, Sarah

Hi Angelena and welcome to the group. It is hard to tell you what to expect because lupus can be different for each person. Reading about it is also scary since so many things could go wrong. But hopefully you will only have a few of them. Gen is right, listen to your body, pushing yourself to hard can bring on a flare. Stress is another big trigger for most of us. Ask any questions, the people here are more the willing to answer.

Alison

Post edited by: redhairali, at: 02/06/2011 08:36 PM

Hi Angelena....welcome to this wonderful support site where you will meet some wonderful people here that truly understand what it's like to live with a chronic illness on a daily basis. I keep a journal and write everything down than I take it to my appointments with me....I forget easily and this helps. I also have a few book on Lupus....I figured since this was happening to my body I should know what to expect and how to take charge of me. Anytime you feel like venting, crying or just to share or ask questions please feel free to post often. I wish you all the best.

Eva

thank you for your support....I'm so confused (scared)about everything being throw at me.

thank you

Angelenna, I know it is scary. I was there not so long ago. I think the first few months I just paid tons of attention to what kinds of things made me feel bad. To much sun for example. I found lots of things like cold water when swimming causes bone pain for me and to much dairy and I have stomach pain. We are all so different and many of our triggers are different. So just listen to your body it helps to know what kinds of things make you feel even worse.

April

Angelena,

You should know that every day will bring something different to your life. You will have good days, bad days, great days.

I told my Doctors that every day is another surprise because it changes from day to day. Always there is a reminder no matter how small the pain on any given day....serving to remind me to take my meds. One dose missed the day before has me reminded.

No two people with Poopus are the same.....some have skin issues with some slight swelling of wrists, hands, feet,,,,others have those listed with headaches, eye pain, etc., It is most difficult to tell you what to expect when each day we don't know ourselves what to expect.

Learn your body....research about Poopus...this will help you tremendously. Research your meds....if you switch meds, research the new ones.

Welcome....

thank you for your support....with the little research i have already done....I think I have had this for a long time and just finding out the truth. I remember 20 years ago I was having small seizures....during all of this time I have alway experience joints that would be hurting (KNEES fingers hips)then different thinging all the time....I start thinking it was all in my head and my family doctor you think i was just wanting pain meds. when all along there was something going on. Thanks again

Angela the rookie