Tuesday, March 22, 2011

Prison

Someone went to prison today, leaving behind a family including small children. I don't know them well, but I know people who know them well.

What struck me, hearing everything vicariously, was the support from the community. People helping out, bringing food, offering a hand, organizing a visit schedule, babysitting. That family is not alone, not by a long shot.

For the last year, I've been in a prison no one ever visits.

A few weeks ago, I wrote in an email to my mom "The taper is going well."

I was excited to write that and wanted to give an upbeat interpretation of steroid tapering as she saw me struggling way too hard over Christmas.

She wrote back.

"What taper?"

This after listening to me rant and rave about the cortisol challenge results and watching me unable to do much more than sit due to muscle pain.

She had been concerned. Now it's "What taper?"

My father is similar. "You're still on steroids?" He has no idea.

I don't talk about the medical stuff a lot to anyone, not even the hubby. No one understands adrenal sh*t. As maligned as fibro is, it's an easier sell than adrenal problems. There's a national organization. There's a catch phrase that instantly makes the whole thing understandable "arthritis of the muscles."

Adrenals don't have a catch phrase. Unless you want to count the plethora of doctors who've said "It can't be your adrenals" or "No, I won't test your cortisol."

The truth is, I've been in solitary confinement for a year. I don't know how long my sentence is and there is zero support.

Maybe it's because I haven't talked to my family about it much. This weekend I tried to nonchalantly bring it up when my father asked me why I was eating again after we'd just had a big brunch.

"I didn't eat anything this morning and I think my blood sugar got a little low. The steroids can do that and I didn't have any carbs at brunch."

Crickets chirped in the silence.

Awkward, awkward silence.

Don't care. Don't know. Don't want to know.

Welcome to solitary day 365 and counting.

2 comments:

  1. For the people who are "close" to us in our families, we can get very tired of trying to explain when it is very clear they don't want to understand. For those, I've learned to just say, "My condition is too complicated for some people to understand," and leave it at that. It's a waste of breath anyway. Since we don't look sick it is difficult for many to comprehend, unless they are in-tune with us and can simply see the suffering and illness by looking in our eyes. For the others who don't want to know...just realize they are incapable and tell them so, then go on about your life. But, I don't think the frustration ever goes away.

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/