Newly diagnosed SLE
I'm a 23 year old mom of a 7 month old little boy. I was newly diagnosed with a very aggressive form of Systemic lupus and membranous kidney disease about 3 weeks ago. I'm trying to educate myself the best way possible on this. I'm at my wits end with all the med changes, fluid retention, hospital stays, side effects, and multiple opinions. I know this is my new normal but I'm going in the opposite direction and not getting better. I'm hospitalized for the 2nd time in 3 weeks and I've been here going on a week, the first time I was in it was for 2 and that was the initial diagnosis. It has attacked my kidneys severely and infiltrated my lungs to the point of having an o2 of 90 at only 23 yrs old and sometimes my lungs are so bad I feel like im drowning. My blood pressure is sky high from the protein in my urine due to my low kidney function and 3 bp meds haven't brought it down. I can barely move and I've been healthy my whole life. I basically am just looking for some reassurance that it WILL get better. I would like to see if anyone else as young as me or with the same severity of the disease has ever felt "normal" again. I just want to be healthy for my son. I AM thankful to be alive and I remind myself that every day but it sure does get lonely in this hospital bed and any support or education would be much appreciated!
Thank you so much!