This is not a sad post. It just is what it is. Having a rare disease is like this. Rashes have slowly disappeared , strength is coming back,, I’m getting out more and doing more , carefully. People see a happy, joyful and cheerful person. They have no idea how much energy it takes. A constant weigh scale of what I want to do and what my body will allow me to do. Choices I am constantly weighing. This is why I decline many invitations. My energy makes me parcel out carefully my energy for daily tasks or risk a terrifying flare, extreme pain and many medications that make me sick along with many emergency room visits to stay alive. But still, this is not a sad post, life is beautiful I have so much love and I stay joyful, happy and cheerful. So extremely grateful to be alive every single day 🙏🏼❤️
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.