That's been the hardest thing for me as well. I was raised always do what you say you're gonna do and be on time. And thats how I lived my life until Lupus. It has been difficult to have to leave my job, and lead a slower paced life. I have had to cancel so many times...I HATE making plans but I hate saying no all the time too....Hard to keep friends but that is the way it is...Like everyone said you NEVER know how you are going to feel and I don’t think anyone really understands or believes me half the time...Trying to spread the word on “My Lupus Journey, My Life” facebook page. Come join me.

I have been living with lupus since November 7/2007 when i found out i was glad i had a name for what i had im more depressed now because it seem like everythong is changing my body my hands hurt so bad right now when i walk my legs feel so heavy not knowing day to day how ur going to feel you just need to pray every night everybody dont accept it but over time i did i hope you do i pray everynight and i pray you be okay with it just remember put Gos first in everything you do

I personally don't make plans with friends anymore..They invite me n if the day of im up to i go..they already know n understand my situation...

I stop making plans ahead of time..What I do is on the day of i will confirmed if im able to go..The only plans i make ahead are vacations but with insurance in case i end up real bad...