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.
I had a bad night. I think the fatigue from Saturday still has a hold of me. I tried weaning down from 3 pills since I have been doing so well, but I I will have to take the other pill tonight. I have had chills all day. I cant seem to get warm. Bad sign…
I have been doing well. I feel confident that I will be fine to wean down a little further starting today. I do wonder though, will my body eventually realize, “hey I’m not getting enough of this damn drug, so I’m going to relapse!” I can never know when that low level is…..until, that is,…
I can usually dodge a cold, and have for the past two years, but this year, not so lucky. I went to work last Friday and overheard several colleagues saying they had colds and that the flu was going around their department. “great” I thought, since I was contract in this building for the day,…
I was doing so well, for weeks. I ate only what was on the IF list and I always stay away from all wheat. I know enough now to know that there is no allowance that I can get away with. None. NOt even one bite of spagetti. But I have not memorized the list…
So the diet has been working so awesome that I can’t believe it myself! I have had absolutely zero rash for over a week! But then while flying back from Colorado yesterday, I had a delay and what turned out to be an almost 3 hour delay. So I fell into my old self. I…
Read more The anti-inflammatory diets works!! except when you fall off the IF wagon
Well last night was methotrexate night. I hate those pills. I was so nauseas today. I slept many hours. I need to change back to Sunday nights for those darn pills. I have ruined my weekend changing to take pills on Fridays. So grateful that my husband is so supportive and generous and understanding. He helps by doing…
Well, the good news is my illness is not getting worse, the bad news is I must prevent myself from relapsing, as I came so close to in Philadelphia. I have been told that it is imperative, mandatory, that I abide by a special diet. I must do this diet as if my life depends on it, because in reality, it very well…
What a wonderful time I had at the AOTA conference! I met some very nice women and made a few new friends too! I took a cab to the airport with plenty of tiime to spare just in case I got lost in teh terminal. But I was prepared. Sometimes when I’m waiting at the…
Read more Happy Travels after AOTA conference and interesting flight companions
I am now at the airport waiting for my flight back to Arizona. I had such a wonderful time here in Philedelphia! I met the wonderful presidents of ASAP and learned so much! Everybody was so nice, so eager to help and answer my questions. I look forward to making contact and building great working…
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…
Adult Onset Stills Disease 