I was diagnosed with SLE at the age of 36, I'm now 40. Being diagnosed was one of the scariest points in my life. The fear, the thoughts of death, were awful. That was 4 years ago. Lupus symptoms are a daily part of my life. I have a bad flare every 2 or 3 days, with my symptoms never totally going away between flares. It can be very hard to deal with on the bad days. But, I also have good days. Sometimes I have really good days as a matter of fact. Yes, I've had to make many changes in my life, and it has not been easy, but it's been 4 years since the diagnosis, and I'm still very much alive. Lupus is by no means a death sentence. We have members here who have had SLE for ten, fifteen years or more, and are living and coping with their disease. I can feel the fear in you words, and I want you to know you are not alone. I've felt it too. I noticed some similarities between you and I as far as symptoms. I had patches of hair fall out on the back of my head. Alopecia Areatta is the term, and it's what led my to the SLE diagnosis. I also have a family member with SLE, my mother. My ANA was positive, and I was referred to a rheumotologist, who gave me the diagnosis. I am on full social security disability, as I'm unable to work. Just remember, Lupus IS NOT a death sentence. I'm really glad you joined our family here. I've found friendship, comfort, and understanding here that have really helped me cope, and have given comfort on my bad days. I think you'll find the same thing here. Welcome.
Welcome. I'm so sorry you're feeling like you are right now. We all have felt what you have though. The fear. But you can't let it stop you from living!
I am a 35 year old woman with 2 children ages 8 and 9. Like you, I've had crippling joint pain for most of my life. I got an infection in my hip joint when I was 5 and have always walked with a limp since then. Then at 16 I started swelling and had days I couldn't walk at all due to the pain. We all thought it was arthritus, but my parents wouldn't take me to a doctor and told me it was just something I'd have to learn to live with, so I did. Then this past Dec something changed. I knew what I had was getting much much worse and the time had come to go to the doctor about it. Doctor suspected RA, did a bunch of blood work, and had me come back in 2 weeks later. That's when he told me he thought it was lupus. All I could do was sit there and cry. When my husband got home and I told him, he just hugged me and cried.
Here it is 6 months later and I'm still here! I'm not under treatment for it other than pain pills, muscle relaxers and Atenolol for my heart. I had to come off the anti-inflamitories due to bleeding. I'm currently under going testing for it. They are suspecting Chron's disease as an over lap to my lupus. I see a Rheumy July 28th.
The first thing I did after my diagnosis in Jan was make a list of all the things I wanted to do with my children. Call it my bucket list if you want, but working towards those goals helps me keep going. It helps me be thankful for everyday that I do have. It took time, but you'll get there too. It took about a week for me and my husband. We decided to live for what we have and not worry too much about the what if's. I still have my list, and I'm still working towards those goals. We plan on one of those things a year so I still have years to get them all done and I do intend to do them. Looking forward to those things keeps me fighting. :)