I had an aunt who helped me not lose our house while Social Security dicked around with the disability claim (it took four doctors – all specialists and two “reviews” and the intervention of the senator’s office to convince them that terminal really is terminal).

And when it was all over, I got sick b/c of the years of stress and the toll. Six years later, I still deal with this and that after effect. And I wish I could say that I have forgotten what it’s like to have to fight for everything and the frustration of dealing with ppl who have no clue, but that wouldn’t be the truth. Every time I have to deal with medical folks, I go into fight mode. I have lost most of my innocence and I no longer believe that DR’s and the medical world are mysterious things that mere ppl like me can’t understand. I question and I google and I bullshit. I am no one’s idea of a good patient.

This kind of experience sticks with you in good and bad ways. It’s like having been to war or living through a natural disaster. But most of us are resilient enough to bounce back and define the terms of our lives again … because we are take charge and we want it bad enough to do what needs to be done.

My cousin lost two years of her life to lupus in her mid-30′s. She nearly died. It took time to put her interrupted life back on a track – not the same one but one that led her to the life that she has now. She’s in her early 50′s now , been in remission all this time and unless you knew her really well, you’d never know what happened all those years ago.

When you are in the middle of something, it feels so lonely and endless. But we are not alone really and everything comes to a conclusion. You are going to be okay. That day is coming.