I don't post on my favorite website (http://www.cushings-help.com/) much anymore -- Cushing's overload, perhaps?? But I do browse the forums quite a bit. A member made this statement:
"Today my husband asked how I was feeling when he came home from work. When I started to tell him he said, 'How could this just start again all of a sudden?' I told him I had been having problems but I just didn't say anything. People who don't have to deal with this stuff just don't get it, sometimes even when they see the results right before their eyes! It is just so hard sometimes."
That really hit home with me. I just know that will be what my DH will say when, and if, I ever decide to go for the BLA. "Why would you want to have such a drastic surgery? You're doing so well! Things are so much better since your pituitary surgery? You'd feel better (or your blood pressure would be better, you'd sleep better, you'd look better, you'd [fill in the blank] better) if we got more exercise and started dieting." He might not say those all at once, but he'd say them. And you know why that is? Because, like my other Cushie friends, I've been sick for so long, and I've gotten so used to feeling mediocre that it has become "normal". And yes, I do feel better than I did before my first surgery. The tumor debulking did some good. The growth hormone has allowed me to walk without wincing, dry my hair without resting half-way through, and pull shirts over my head without crying. And like my cohorts in this Cushing's battle, because we feel better than dead, we push ourselves and put on happy faces so that the ones that are close to us really don't know that our bodies are failing us.
I'm going to turn 50 in a few days, and guess what? I can't keep up with my 90-year-old mother. I can't work out in the yard all day like she does ... carp, I can't even clean out my walkway flowerbed unless I do it two hours at a time. She has blackberry vines and goes out twice a day in the Texas heat to pick them. I can't even sit in a chair outside while she picks the berries because I'm too heat-intolerant. My neighbor says "hey, you want to come to an exercise class with me?" Sure I would, but they'd have to pick me up off the floor when I passed out -- exercise intolerance is still with me (although at least I can shop through Costco without passing out now). I want to take my grandchildren to the zoo, but the thought of walking that much scares the dickens out of me. And darn it, I want to buy cute pants. But the only thing that is comfortable anymore is something with a drawstring. I refuse to wear floppy clothes when I go out, so I stuff myself into jeans and smile; all the while the waistband feels like it is going to cut off circulation to my legs. The minute I get home, though, it's back to the stretchy pants.
No comments:
Post a Comment