I have not really used facebook in years but find myself checking the site daily to read update in a wonderful community about individuals with Epidermoid Tumors (The Epidermoid Tumor Society or EBTS) and it has been and continues to be an incredible resource throughout this entire process. I love being able to connect with individuals with whom I can relate and turn to for support. For example, someone posted today about being anxious before surgery and then having the surgery not so bad but getting frustrated at not being able to pick up her children afterwards; since I completely related I posted the following reply:
" I completely relate to your experience! The anxiety prior to surgery was about 10x worse than the surgery itself. I also have a young daughter and it is incredibly frustrating being able to pick her up and play with her as I used to (crawling around the floor and bending over); I am also a little crazy about limiting screen time do you have any suggestions on how i can keep her busy? In addition, I am unable to work as I am a Behavior Analyst for Birth to Three which requires me to "be able to lift and carry 25-50 lbs" and lots of bending over "
I did not want to totally take over the post so I am going to post a bit more about my frustration here. Specifically, since I work as a contractor I am not getting paid for all of the time that I am not able to work and that is incredibly stressful not only because I need to be at least some money and love working with kids but also because I am not sure if/when I will be able to return to my job as an early interventionist. I have asked my boss if there is any office type work that I can do but unfortunately there is not. Will I need to look for a new job? What will I do?
I really need for my mind to be busy and feel a sense of control over something because although I have increased the variety of food that I am eating, I am obsessive about walking and controlling my food intake. I am now at ridiculously low weight and honestly look like a scary skeleton and while I want to gain weight I just can't seem to let go of the control. I am seeing my therapist again and sent her a manual for Cognitive Remediation Therapy for Eating Disorders and I am really hoping that it helps.
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