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 have always felt that change is the only constant we have. If we are not flexible with change, change will be forced upon us. Nobody likes things forced upon them. However, there are many times through life that change occurs and we eager for it, example graduation day, a promotion at work, a new…
At the hospital again. This disease just keeps popping up with new ideas to cause pain and endless nonsense. Drawing blood and more blood. I must have 3 ounces left in me by now. Fun times in the neighborhood.I know 100% that this hospital lobby would be more fun if they put in a small…
It wasn’t the best New Year’s Eve Ive ever had, but we take what we are given and do the best we can with it. Wearing dark glasses looks a bit mysterious, but also kind of intriguing! I have 2 choices, I can play that I am a famous movie star that doesn’t need paparazzi…
Read more Prayers for the best year of health for my and others with AOSD
For the past 4 weeks my right eye was terribly inflamed , extremely painful and horrible headaches all night. The ache was so bad that I would lay flat during the evening with ice packs over the eye to get relief. My sleep was non-existent for days and days. I lay all night with my…
It sure seems that many people are increasingly overwhelmed and losing their cheerfulness. Many of the people I know, appear to be under more stress than ever. This makes me feel a desire to help them sort out their feelings and ease their stress. But I cannot take on the role of therapist for everybody.…
Read more Staying positive in a world that can be overwhelming and sometimes negative.
Well, if it isn’t one thing it’s another right? Remember back on August 6th when I slipped and broke my femur and they didn’t find the other 3 broken foot bones until 3 months later ? Then the cast but the extreme pain brought on the flare? Well, my Rheumatologist had me do a DexScan…
I found a unique site that asks to write a sentence about your rate disease. I wrote this. Today I had a wonderful and unique experience. I was washing dishes. I know right ? Wonderful, not!! But, really! Something shifted. I felt happy. I felt calm and serene and home. Yes, home. When I recall…
Read more That stupid dragon. It has nothing on me ! And never will!!
It has taken me a long, long time to learn to say, “No, I can not. I need to rest”. There is no need to apologize. But, I often catch my self saying, “Im sorry”. I am not sorry that I am taking care of me. I am not sorry that I am putting my…
Read more Never feel guilty for Saying “No. I need rest” Just put your paw up!
It’s so hard to have a disease that is so unpredictable and sometimes invisible. This is when I have to put my paw up and say “I’m needing rest and can not participate.” This is hard to understand from friends, especially when the steroids pump you up and you have energy….until you plummet into the…
Read more “But you look fine. What do you mean you don’t feel well?”
Adult Onset Stills Disease 