October 18, 2012
"starting is so beautiful" - Rainer Maria Rilke
I try to stay in a place of "flow" - acceptance of what is, but steering my boat gently at all times towards a destination of management, ease, and optimism.
Everyone. Every individual has a story to tell, has burdens, has gifts. I treasure what I've learned from everyone I meet.
Perspective is key. Shifting from the search for a "magic bullet" or miracle drug, to acknowledge that this is the new reality, is important. It sounds negative, but acceptance can bring a feeling of peace, and a sense of control. Once we accept it, then we can start to assess it, work on our attitudes about it, grieve for what we have lost, and embrace what we have. You also must be your own advocate. With every doctor, every phone call, everyone you already know and those who you meet. Particularly if you have an "invisible illness" so you look well. Never assume your doctor is coordinating all your care - something you must do for yourself. Document every prescription, doctor visit, and major flare/episode/issue in a simple way. You will need this to see the larger patterns of your disease journey, and also for documentation should you need to stop working and receive disability benefits. Write your own health report and provide it to your doctors at every appointment.
Hi, I'm Jessica.