Diag in May with SLE - had suspected for years I had it. Two sister have SLE (youngest died at 59) and one has MS.
Fatigue is my biggest problem. I blamed my thinning hair on my Grandmother but know it is probably the SLE.
I must say, I feel EXTREMELY fortunate after reading what many of you are going through. Wish I could help with suggestions but don't have 98% of the problems talked about - just know that I will be wishing all of you the best you can be each day.
I will know stop feeling sorry for myself and get moving and get things done I have put off for months. I know I may not keep this level of activity and should get my "stuff" in order
Welcome! We are happy to have you with us! Let us know if we can be of any support. While you may not have some of the severe problems that are discussed here it helps to have others who have “been there done that” who can help and support.
Welcome. I find this site very helpful, very informative. Try not to be too hard on yourself. What you’re experiencing is real and you have a right to be upset about it. At the same time, yes, we do have to carry on. Just know you’re in good, caring company here.
Finding out we have Lupus, really does bring a wave of emotion, finding our positive energy can feel eluding at best!! I am glad you feel fortunate and understand that things could always be worse, this is true for all of us. Please remember that while we have a life line in remembering our blessings, it is also important to acknowledge our pain, frustration and fears.
I really like the part of "get moving and get things done"! I have days that I can clean my house and go grocery shopping all in one day. I have days that opening my eyes is just to much. Even on these days, I at least get up brush my teeth and get dressed. Keep moving and plan ahead for flair ups!!
Thanks. The flairs are so unpredictable! Wed got up doing great, by 11:00 into a MAJOR flair which pretty well did me in for two days. I hate the "fog".
err Welcome to the 'club' So very pleased you are currently on the lighter end of the scale. Fingers & toes all crossed you stay that way for a long time. Like your attitude re
"I will know stop feeling sorry for myself and get moving and get things done I have put off for months. I know I may not keep this level of activity and should get my "stuff" in order."
When I was first diagnosed I was on the lighter side. I still do not have the severe symptoms that I read that a lot of others have but have advanced to the point that it is difficult to clean my home and shop. I now have to have help doing these things and it is hard not to be independent anymore. I take the days I can do things and thank God for them. The bad days come but I'm thankful for the gift of life. I wish the best for you and know you will get encouragement from this site. I have!
Thank you all for your words of encouragement. I have learned to take it one day at a time and do what I like not necessarily have to do. Have a cleaning lady which really helps. Just to want this to stop me from my knitting. Enjoy that too much. Have to use all the yarn I have SOON.