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It started with a hand written journal to my husband and son listing my final wishes. Then it became an online journal to my family to communicate medical information and it finally became a way for me to express my frustrations, joys, disappointments, and my future plans. I changed drastically as a person through these six months both physically and emotionally. You get to witness the roller coaster of feelings and events of what it's actually like as a patient of a rare disorder to try to figure out what is really wrong with them when nobody has any idea, not even doctors.