I guess, I have to admit, that there are some positive things about having this weird disease. I have slowed down my lifestyle a little. I am very conscious about my energy expenditure and I think about how long each task might take. I do sometimes need reminding that I am about to overwhelm my body. Last night we were packing to move to the other house. I had worked all day and started to pack. It wasn’t until 9pm when my husband said, “o.k., you’re done, STOP!” I was a little ticked, but when I looked at my abdomen, I had very raised red bumps & rash all over. I just get carried away. I am like the energizer bunny. I don’t stop with a task until it’s done. I don’t know how to taper down. I have a fear of procrastinating. I have a fear of being a “slacker”. I never want to be seen as lazy, as someone who doesn’t pull their weight, or doesn’t know how to stick to an agenda, or can’t get things done. I want to be always recognized as somebody who finishes what they begin. When I was a child, of 6 or 7 I joined a girls group called, “Bluebirds”. I think it was the group before the “Campfire Girls”. Anyways, at the opening of each gathering, we would have cookies and punch, and stand in a circle and recite our “vows” of loyalty. I don’t recall all of them, but the one I do remember, and have always remembered is: To remember to finish what I begun. I think there were 10 vows, But, strangely, I only remember this one.
I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.