"The truth is rarely pure and never simple" (Oscar Wilde). -- This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder.
Monday, March 21, 2011
new GC
Just a quick post - my GC emailed today 1 in a series of many over the past couple weeks tying up lose ends from our last appts and before she hands me off to the new GC she works with - not a new counselor to the clinic but new to me. I scheduled the sleep study for the 2nd week of April and GC is going to try and get the script for order from my geneticist over to Interventional Radiology tomorrow to get that scheduled after having met with them last week. The new counselor if my research is right trained at UNC and did research in MPS II and III which is neat and interesting no doubt. :) Im not sure when i'll meet her formally but I think I may know who she is by sight. I pray it works into a good relationship - I really, really do. I could use another great advocate on my side who is willing to work with me. I will update when I know more.
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