Butter fly Rash

Hi,

I used to think people around me did not understand what I was going through when I was first diagnosed 17 years ago. What I found out was that many people were afraid to ask or hesitant because of their own fears. It took time and patience, which is difficult when you are feeling miserable, to finally have the people around me come to comprehend my journey. It was an education for them and for me. It also gave me an opportunity to really open up to people. They could tell I wasn't feeling well and tending to isolate myself, so they kept their distance. As I became more open, I found out that they were truly concerned and wanted to understand. Not everyone was like that. I kept my distance from those people because it truly did not help me. Where this process paid dividends was at my work place, especially when I cut back my schedule to four days a week. By my being honest and helping to educate folks about Lupus, they became more receptive to my need to modify my schedule and understand when I took more sick days than usual.

I felt that early on Lupus was wrecking my life as well. But I found that with time and more understanding on my part that I was able to live life....not as fully as before, but in many ways pretty darned wonderful. Change is always difficult and sometimes we feel cheated by the hand we have been dealt. I have learned to trust and be thankful with what I have. It wasn't what I assumed my life would be like at 61, but it's the life I have now. Surrounding myself with incredibly understanding friends and living in an environment that nurtures me has helped immensely. And finding solace and support here in this forum has been a blessing.

Hang in there!
Laura