Help needed, want to know more about lupus
I just turned 25 on the 18th and I was diagnosed with SLE back in October. I have discord lupus and problems with my blood. Everything seemed to be fine, the symptoms were gone after I started to take prednisone and plaquenil. Once I felt better, I started to go back to work again, only 3 hrs on Monday, Wednesday and Friday. I guess going back to work after 2 months of medication wasn't a good idea. My lupus is active again, I had a feeling on Monday that things are getting worse after I saw a counsellor. I sometimes feel pressured by the insurance company to return to work and the agent wanted me to work daily and to increase the working time by 1hr each week. Yesterday, I called the agent again for the 2nd time and insisted that I can't increase the work time. She made me feel like I didn't want to get well, but I was having trouble telling her that I wasn't feeling well. I was crying during the call, I felt sorry for myself that I wasn't feeling well, I can't explain to her why I can't be on the phone for 3 hrs. I am glad that I cried at work, everything was so understanding and supportive at work. I finally had a good cry, my first cry. Once I started crying, I wasn't able to stop.
I am still clueless when it comes to my physical condition and lupus. I read a lot of information online about lupus, but I can't apply the knowledge. It took me about 2 weeks to accept the fact that my condition is getting worse, that the rash on my hands are worse, I am losing more hair than usual. I wanted so badly to be fine, that I will always find some excuses when people tell me my hands are red or I'm loosing my hair. I finally accepted the facts and went to see my rheumatologist, who confirmed with me that my lupus is active.
Does the flare occur often? How long does a flare normally last? What to do during a flare? How to cope with lupus? Did anyone change their diet due to lupus? When to return to work? And most important, how do you know when there is a flare?
I still can't tell my physical limitation, I am so confused. I want to learn about your experiences, please add me to your msn if you have msn, I would want to chat more about lupus.