I need to take this thread and turn it into a tiny IV that will flow continuously into my blood and into my heart; I need the reassurance that this page provides - I am not alone, we are kindred. Even when some of you write of pain and disappointment I feel better, because I feel the extension of myself in those words. I don't feel quite so lonely and isolated. What all of you have written has made me feel better, and I am going to keep writing here.

I have not been very successful in finding a therpist however. The ones I have found are too expensive - but they are ideal. It is monstrously devastating. I am hoping that by becoming a part of this network of supporters I will feel better and it will reflect on my dynamics of the relationship with my husband (and others as well), but how does he get help and we get help together? We live in a VERY isolated area, I can't drive due to my Ganglioneuritis, and we have no monetary resources and all the therapists I have found that have experience with chronic pain - do not take insurance..............

so can I spew here

I was struck down by my chronic pain at the height of my life; I was a go getter, do it now, gett'r'done gal. I worked at my children’s schools: preschool and elementary. Volunteering for every committee, in all their classes, volunteering for two horse riding clubs we belonged to(president of one), participating with a civic group my husband and I had pushed to startup. When someone needed something done they came to me, if there was a new committee to start up they called me, and if there was an open position they called me because I would be there! I was active, energetic, organized, involved, independent, helpful and got things done - happily. I was on the demanding side, probably controlling and pushy at times - but it was what I did and I did it good.

That is what is hardest for people to adjust to - they (nor myself) can't adjust to who I have become versus who I was. They honestly want to know how I am doing - because they can't reconcile the new (sedentary, dependant, helpless, angry, inactive) me with the old. So many people saw how I changed, and it hurts to try to push them off, when I know that at this point I don't think I am going to ever get better.

Because I have a condition that a "mystery illness" that further makes it hard for people to understand about whether or not its going to go away or not. They really do care and are as tired of it as I am - but then all we ever talk about when we get together is my condition - so that is what I have become - my condition. I know that is not what these people mean to do to me, they just want to help, they are concerned. I always try to highlight them on my most recent treatment and condition - but to tell the truth, I am often am just my condition. I don't do anything else. I can't do anything else. My pain and condition do not allow for anything other than to focus on my condition -sick twisted circle isn't it?!

The closer people ask and then we move on and talk of ther stuff, the closest like myself and my husband and others get all messed up in the pain and aggravation of it. We get all wound up and screw up our relationships’ - how do we fix that when I don't even know how we get there?


I look back at this and read it and honestly feel vomit at the back of throat -

HOW did this happen to me - I had it all right; a happy focused life, a decent marriage, 4 children, a home and now ALL of it is in misery and in jeopardy. We are in financial ruin because of my medical bills, my marriage is at the bottom, my children are miserable because my marriage is miserable, and I can't get off the couch.............................

i was feeling better, now i feel like *%#& again....

gonna go for a while.....


This thread is gold, your words are iridescent, your message is luminous, please keep the support flowing ...