I had an MD appointment today. I will be taking a break for a while. I have not felt well since the book reading. It was too much for me. I have found that I have endurance each day for about 2 hours after this i am extremely exhausted. After the Jaxon event, I slept 17 hours and the next day I slept 13. Last night I slept 11 and I feel better. I am very recent out of the disease process since the severe eye infections in December/January and the back to back flares last year.
I can not afford another flare. A person in my disease group died yesterday from complications of his last flare. This is the problem with my disease, each flare is potentially death. If it attacks the lungs or heart, the disease runs rampant and kills. As soon as one of my flares come on (praying never again) I am in the emergency room and flooded with many medications to keep me alive and to keep the virus away from my heart. Fortunately, my flares have attacked other organs, but we pray that it does not ever go near my heart. The person who died was a gentleman man i spoke with often in our private group. We all give each other pep talks and prayers of health to keep the “dragon away” as we all call it. We pray when one of flares, we cheer when one of ends a flare. We mourn when we learn from a family member that the dragon has taken another sweet soul.
A few years ago, the administrator of our small group passed away from an intense flare that came on and ravaged her to death. And although she had 15 years of no flares. The dragon came back swift and fast and killed a beautiful soul.
So, please respect that I will not be attending any mini events for a while. Perhaps in the future, but for now no events.
I will be enjoying my horses. Making art. Writing and illustrating a new book on forgiveness. And a book about Nunu. Right now, I am happy no flare. And I plan to keep it this way at all costs.
Stay healthy my friends.
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.