I am Coleen- I am a painter, a poet, a prankster. I live, love, and laugh in spite of the pain. I guess what led me here is links from where I submitted some of my pain art and I've read several posts here in the last few days that I found deeply personal and revealing. They made me want to join, want to be part of a community where maybe I can occasionally help, and on those bad days, be helped. I am by turns, brave and defeated, feeling relatively ok, you know, like I might live through the day, and have days where if someone looks at me hard, much less touches me, it hurts. I have Fibro, Adhesions, Arthritis and Chronic Fatigue and something as yet unnamed that makes even the slightest touch on my body intolerable. It burns, it comes and goes.  I just responded to someone who posted in Feb, under the header-life in hell a gentleman whose post touched me deeply, I'm going to post my reply again here in the body of this post as it kind of speaks of my own journey and life philosophy as a person living with chronic pain. Before I do, I want to say, to all of you, how brave I think you are, and how my heart is warmed by the cohesive nature of the verbal and emotional support you show each other. I am accustomed to dealing with my own situation more or less alone as I have very little in the way of support within my family, they just don't won't or can't understand it and I am beyond trying to illuminate them. Some people just are not equipped to validate something they can't see or feel for themselves. I have forgiven that lack and am no longer willing to make myself ache for want of their validation.I know we are encouraged not to identify ourselves fully, and I know that there are good reasons for that, but it is part of my therapeutic healing to make exactly that revelation. I need to not have pain my dirty little secret anymore.

the reply to life in hell

I'm Coleen Shin. 47. I'm a writer/artist/ photographer. For 20 plus years I was a GM with Eyemasters before it got too bad and I had to say goodbye to a career I loved. Lots of pain, lot of bullshit with docs, and family (inlaws), it's the same song you hear here, just a different composer. Lets talk about the mention of suicide. It crosses the mind, seems a viable option, for me it was that one thing, that ace up my sleeve that was there for the day when I could endure it no longer. Well, with some of us that day seems like every other day. I sat one day and turned the idea of it over and over in my mind, it was such a specter living in the dark, always in the back of my brain. I considered all the repercussions of the act, just like you, the effect on my family was foremost and what had stopped me time and time again. I have a lot of teen and pre-teen nieces. That's what stopped me cold every time. They are so impressionable, I just couldn't put that act in their brains as a solution for any kind of problem. It really broke my heart, I found I had depended on it as a last ditch option,  But it was off the table. I had even considered a number of ways I might could make it look like an accident if need be. But a suicide always comes out in the wash as just that, a suicide. So I was faced with a decision, live with the pain, or die slow with the pain. I decided I would live with it, recognize it as a real and permanent entity in my life for the foreseeable future. I do pray for the treatment that may come along, that may make my life better, but I don't bank on it. Now pain is the "the other" it is not me, it lives with me, but by God, it is not me. I seperate my real self from it in my mind, remember and allow myself occasionally to mourn the fast, funny, constantly on the go girl I once was, but I have finally met the person I am now. A deeper more introspective person, a person of empathy, a new woman with wisdom and experience who is ever on the look out for ways to express through my art and writing, the battle I wage. I bet I wrote a hundred poems and painted dozens of self portraits where I fight and fail, plead and beg, conquer and destroy, and then finally the paintings where there is a peace that the pain can't touch. You may not be a painter or poet, but there is something in you somewhere that is stronger than the pain, your pain will sit on it, hide it, mask it, but it's there I promise you that. It will come if you allow it. I hope you have at least moments of relief, almost every pain syndrome does have cycles, I don't care if it's after a good dose of pain meds when you feel lighter and and a little dizzy, a little stoned. Rock in those moments, let your wife and children know you love them and this isn't their fault anymore than it is yours. Start a journal and tell everyone you love, why you love them. Mourn the person you were, then embrace the person you are. Remember change is the only constant in this life and the opportunity may come in the future where some treatment works for you and then you can bid this person you are now a dignified goodbye. Remember, please, that there are thousands, maybe millions like you and we all have a common bond. Remember you are not alone. Peace to you my friend.  Respectfully. Coleen