And It's About Time There Was Some Support For Cushing's!
My 23 year old daughter was diagnosed in May of 2003 with Cushing's caused by a tumor on her right adrenal gland. She had an adrenalectomy (sp?) in July at Surgery was at Brigham & Women's in Boston.
She was a size 15 in July, and is now a size one - just what she used to be. Her remaining adrenal gland has started producing cortisol. It registered a 7, and the doctor says mine would be around a 12, so I feel she should be well on the way to recovery.
Unfortunately, now she seems to be suffering the emotional effects of this disease. I had read up on Cushing's, and was aware of the frustration and possible depression, and thought she had missed them. She was waitressing 5 days a week, going to school three nights a week, is a single mother raising a three year old, and appeared to be handling it all well. Then school broke for the holidays, and by the time she had to go back (2 nights instead of three) she was a changed person. She is tired all the time, can barely drag herself out of bed, has no appetite to speak of (fortunately recent tests show no anemia or malnutrition), snaps at everyone and is frustrated that she has to take the medication every day.
I try to be a "cheerleader" but I know she's sick of me, and I know whatever I say doesn't get through to her because I really don't fully understand what she's feeling. Which is another problem.
Because she doesn't look sick, people don't think she is sick. I have a sister with Lyme disease who has the same problem, so I understand how irritating that is, but there is nothing I can do to help her short of following her around and educating everyone she comes into contact with. This has affected her job enough that she gave her notice, citing her illness, and they refused to accept it without a doctor's note -which she got. She ends up feeling that people think she's lying, and, of course, she's not.
So, I've come to this site less for myself than to try to find answers and/or understanding for my daughter. People who can relate to what she is going through, give her advice on handling this disease and it's side effects, what to expect down the road, and to give her the encouragement I can't fully give because I'm not living with it.
And maybe some suggestions on how I can help - or not, because I know sometimes that's just as important! Here's hoping ~~~~~