Im 40 and just diagnosed with SLE. and i am scared
I have been hospitalized 2 times in a 3 week period. i have been getting fluid built up in mu lungs. so i cannot breathe. that alone is a scary thing. Then when i was in the hospital they did all these blood tests and they say i have got SLE. so i cannot be on the steroids for a long period because they make my sugars go thru the roof. but every time they take me off them the rash comes back and the lungs fill up. i was just started on the plaquenil 400mg once a day. but i have been disabled for 5 1/2 years with alot of other things going on. and now i have been made to feel so guilty every time i have to go to the pharmacy for meds it adds stress to an already stressful life. I mena he does not say i cannot get the scripts but he carries on everytime i do. i makes me feel so guilty. he says if we had the money i have spent on meds for the last 5 years we could have bought a house cash. i feel like crap them. also he has had to deal with me for the 5 yrs and i am happy he had been there to care for our now 11 yr old daughter. but i feel the best support i has is with my mom and my daughter. but i feel guilty with her also because she has had to be a care giver at times and that is not a way for a child to live. she needs to live like a child not a mom. i want to know what to expect from the disease. what to look for and so on. i am scared. i want to live to see her get married and have kids of her own. is this a possibility. i had a friend many years ago who had this and she passed away after watching her suffer for yrs. i just dont want this to happen to me. what can i do. everytime i stop the steroids then 2 to 3 weeks later i am in the hospital. the dr says i will take 2 months to have the effect of the plaquenil. is this what everyone has found. or can i look forward to having it work faster. I dont remember whta he called what it is i have but it is awful. and can this go away. i would also like to have a chat pal that i can email directly and chat or IM when i am lonely or scared. is this possible. i live in Ocean County NJ. i would love to have a close chat pal. so please help me.