Cushing's Info

Carol, I posted your question several places including the message boards at http://cushings.invisionzone.com/ and http://cushingshelp.posterous.com/

As answers come in, i'll post them here. Hopefully, others will post their answers here directly.

Best of luck.

The first answer is from http://cushings.invisionzone.com/index.php?showtopic=51204

The respondent writes: Quote:

Carol,

That's an interesting research project. Thanks for asking us.

What I looked for, and found here, is sound information based on both research and personal experience. The researchers are not living with the disease, so they can't tell the whole story. Cushies share experiences so that common patterns develop--patterns the doctors and researchers usually don't see or don't care about. But when we see a pattern that we fit into, we know we aren't crazy. And that makes a world of difference. The combination of research and experience provides a more complete data base to learn from.

I also look for compassion, acceptance, and emotional support for both my struggles and my victories. This can't happen if people aren't posting frequently. (Yes, I know I've been inactive on here for several months, but I haven't gone away completely and will return stronger and more active as I heal). I need a real community where people care about each other. So many Cushies have been abandoned by real family that we need to find family in our support group. We have that here. As in any family, there are the inevitable occasional misunderstandin gs and disagreements, but in general, everyone is respectful and friendly. We laugh and cry and learn and celebrate together.

I look for usable coping strategies and referrals to doctors who know this disease best and are passionate about us winning the battle and "getting on with our lives, already." Without this group, I'd still be dying and trying to find a diagnosis instead of being cured and beginning to find my life again.

I hope you get a lot of really helpful responses and you will share your final report with with.