Well, I must tell you, I had the most fascinating day at the Philadelphia AOTA conference. I sat in on my 1st meeting at press-elect of Arizona. I had such a great day listening to the motions, voting, listening to Dr. Florence Clark, my idol!!! I have not told her yet, but I will later this conference that I remember her talking to our class as our professor at USC. I admired her then, and I am in awe of her now. She is such an inspiration to the field of OT.
I had a great lunch round-table with some of the state presidents. I am thrilled to have had the time to sit and talk with them, brainstorm and express ideas. I met an awesome OT who also works in the field of mental health. I look forward to sharing ideas and hearing her strategies, since she has years in the field of mental health. Although I would not trade my 14 years in trauma and ICU, I do wish I found I mental health earlier. Such an exhilarating day!
I went to dinner after the meeting and reviewed my notes. I was extremely exhausted when I finally got back to my room and felt chills coming on. I was hesitant to look at my skin to find what I did not want to see. i lifted my blouse to peek at my skin on my back and abdomen. Holding back tears I knew that I would see what I did not want to see. My rash was so severe that my legs and abdomen looked like the skin of a raspberry, huge red hive looking bumps. thousands of them all over. I prayed, “please don’t let me relapse now. please no, please not now I have so much to see while I here!!” I could not start the steroids tonight for fear that the dose would be so high that I would be awake for 3 days, like usually what happens. I took 2 Alterill pills instead and went to sleep. I slept 13 hours. I turned off my alarm so that my body could get the rest it needed. I will pace my self the rest of the conference. I hate having a disease that has slowed my life down so much. I am going at 1/3 the speed I used to go, kind of like a car that used to run on 8 cylinders now running on 4. I will survive.
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.