Hey everyone. I am new here and just need some help. My best friend has lupus. And i never even knew what it was until we were friends. I find it hard to understand her lupus and it makes her irritated i guess you could say. I don't know how to help her. I don't know what to do. I know I can't actually help her and it drives me crazy because I am in EMS. She is trying treatments but continues to get a bad reaction and has been taking one medication which doesn't really seem to help but she has no other options. She has a lot of back pain, writs pain, and over all body pains. She takes narcotics and has been on medical marijuana for a few months. She had a TIA a few months ago which was pretty scary. I understand I don't have to physically go through this hell of a disease and i wouldn't wish it on anyone but I was looking for some guidance on how to cope with seeing someone i care so much about struggle so badly. Most days she can't get out of bed. She has multiple diseases some i can't even remember. She has this one thing.. periodic hypokalemic paralysis which her body dumps potassium and if you don't restore it she basically stops breathing. She has heart issues and liver issues. Along with the TIA and a lesion on her brain. For those of you with lupus.. how does your family and loved ones help you? What do you wish they would do differently? For those of you with a loved one with lupus... How do you keep yourself going? How do you manage not to take on their stress? how do you stay strong enough to help them? Im really sorry for the rant i just know i need to be stronger for her and thats what im looking for.. Strength thank you !
Has she looked into holistic treatments? A neighbor of mine has found that to be the best thing she has tried yet.
CK I will look into it Im very new to this and am learning! thank you!!
Thank you I am trying to be the best I can be for her. I guess my biggest fault is myself. I think about all the bad possibilities, and all the scary things. I think about how the Dr's don't know much. How you don't hear about lupus all that much which makes me nervous about research or lack of. I continue to try thinking of all the good things. and the good days.
Hello...I think it’s so wonderful that you are trying to understand this more for your friend...I have lupus, and some of the things that have helped me with explaining my illness with my family is by sharing the “spoon theory” with them..please google it....also just listening to her without trying to fix it or ask any questions...just love her and listen...You are an awesome friend!!...I hope this helps...Be Blessed