Living with Lupus

I was diagnosed with Lupus on Dec. 14, 2006, just 9 months after my Dad died. At the time I had no clue what my life would be like in the future. I did not know that I would have to live on a daily diet of medicines and that the side effects from them would some times be worse then the disease.  I had no clue that my life would change so greatly and that my first thought before doing anything would be "do you think I can do it? And how will I feel after I do it if I decide to do it?" I go to a Rhumatologist that I absolutely love the staff there. If I ever have a question I just call and ask and they go get the Dr and put him on the phone right then. That is very uncommon. I have a wonderful family that helps me whenever I need it, but sometimes I feel guilty for even relying on others. I have always been a very competitive person and  not one to let someone else do anything for me. I have always been the type of person that if it needed done I did it. I did not want to wait for help, I just did it. Even if that meant moving heavy furniture. Removing carpet, painting, climbing ladders, whatever I just did it. Now I feel cheated because I have to rely on others. I still try to act like I am "Normal" so I can feel normal. I feel like I HAVE to get up early just so people (my family) included will not think I am lazy. I know they do not feel that way but you can not help what you feel when you wake up and feel horrible but get that panicky feeling to get up and act like you are ok.

Truth be known I do not want to know how I will be tomorrow or the next day. I do not want to think about  living forever with this disease that they have not found a cure for yet. So I guess I will continue to live day to day since that is how I have managed to survive the last almost six years.

I started the new drug Benlysta (first FDA approved drug for Lupus in over 50 years) a little over a year ago and I am proud to say that I have seen some improvement in my daily life. So there is always something to find positive about your life!