Time Flies. Or Not.

Today is the first anniversary of getting my diagnosis of Erdheim Chester Disease. How clearly I remember our concern of being called back to the orthopaedic oncologist's office after having had an initial all-clear on cancer just a week or so earlier. The relief of the previous week turned to fear - who gets called back after being told that a tumour isn't cancerous? Had the pathologist made an error?

I'm really not sure where my mind is at today. Today is one of my tough days, and even lifting my arm above my head seems like a monumental effort. What will the next year bring? Will I see any improvement - will I have access to the drug that just might improve my quality of life?

The waiting is doing my head in right now.