It makes me sad to tally it up and yet I know this is only a portion of the things Cushing's has stolen.
Sports were the first thing to go. Alex loved soccer and played for many years before she got too sick. That same year illness forced her to give up dance; she was involved in tap, ballet and jazz at an advanced level for her age. Despite her tenacity she missed a day of the try-outs for junior high volleyball and cried knowing it meant she wouldn't make the team.
A social life. The isolation that came with being too unwell to attend regular school started at 6th grade. The school sent a "home/hospital" teacher to tutor Alex from home for the majority of middle school. How does a child make and sustain friendship when they can't attend school or play sports? Alex was determined to try and live a normal life despite the debilitating daily headache and signed up for traditional high school. She made it through half of her freshman year and attended a single dance before the school could no longer abide her lack of daily attendance. Since then she has attended (and I use the term loosely) Independence High, where students work from home at their own pace and meet with teachers weekly one on one. No dances, no clubs, no sports, no social interaction. I know for some teens this situation would be a dream come true; she isn't one of them.
An education. Sick again, it doesn't look like she will be graduating. She's been accepted and plans to go to college in the fall, but if she doesn't graduate college will be put on hold.
A normal body. She has been "the fat girl' since 4th grade when the weight gain started. Dieting and exercise don't work if you have Cushing's. Can you imagine gaining 10 pounds a week while eating 1500 calories a day and exercising (and having chronic diarrhea)? Even knowing, she continually tried to lose. No swimsuits, no laying on a beach, no pool parties, for the girl with Cushing's.
The possibility of having a child. Is it possible? Maybe. As far as getting pregnant, she doesn't make LH or FSH any more. She takes estrogen and progesterone to supplement what little she makes; with the help of a reproductive endocrinologist, maybe. What about carrying a child? It would be risk to both Alex and the child. Medication dosages would need to be carefully controlled. Then there is the biggy...what about the possibility of passing on the disease? She says she wouldn't take that risk.
My heart breaks for her to have never experienced a normal childhood or teen years. Life isn't fair; but you shouldn't have to learn that lesson so early.