Just wanted to drop a note to say thanks for taking the time to post about the petition.
I've signed it as well of course. I only wish I could keep my head together long enough these days to write something that comes from the vast amount of experience I've had. 12+ years of chronic lyme decimated what should have been the best years of my life. I finally did get proper treatment, which my family paid 20k out of pocket for after spending months in the appeals process with the insurance company, jumping through all their ridiculous hoops until I finally got to the point where I couldn't put off treatment any longer. I'm still recovering from lingering neuro-psychiatric issues which basically keep me on the sidelines for just about everything... especially the things I feel strongly about.
The sufferers of chronic lyme have it bad enough but then we're continually getting kicked while we're down and despite our numbers we have no voice. A bunch of sick, tired, cognitively impaired people that work their asses off day in and day out just to have the energy to get out of bed, hope for a good day once in a while, etc. aren't exactly in a good position or at all cut-out to stand up for themselves. Every post like yours adds a little glimmer of hope.
I'm glad you see the effect this issue will have on all tax-payers, not just those suffering from the disease. I had posted a short bit about it in very basic terms a while back in this lj post (http://dream4distance.livejournal.com/96404.html).
I don't feel the language of the petition itself does a very good job at expressing concern over issues beyond the problems with initial diagnosis guidelines. It's too late to change anything now though and the important thing is to stick together if we're going to have any hope that we may make an inch of progress.
Oh, and for the record, if it weren't for my family, I'd be on disability myself... or even more likely, wasting away in a mental home. As you eluded to, not everyone is so fortunate.
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I've signed it as well of course. I only wish I could keep my head together long enough these days to write something that comes from the vast amount of experience I've had. 12+ years of chronic lyme decimated what should have been the best years of my life. I finally did get proper treatment, which my family paid 20k out of pocket for after spending months in the appeals process with the insurance company, jumping through all their ridiculous hoops until I finally got to the point where I couldn't put off treatment any longer. I'm still recovering from lingering neuro-psychiatric issues which basically keep me on the sidelines for just about everything... especially the things I feel strongly about.
The sufferers of chronic lyme have it bad enough but then we're continually getting kicked while we're down and despite our numbers we have no voice. A bunch of sick, tired, cognitively impaired people that work their asses off day in and day out just to have the energy to get out of bed, hope for a good day once in a while, etc. aren't exactly in a good position or at all cut-out to stand up for themselves. Every post like yours adds a little glimmer of hope.
I'm glad you see the effect this issue will have on all tax-payers, not just those suffering from the disease. I had posted a short bit about it in very basic terms a while back in this lj post (http://dream4distance.livejournal.com/96404.html).
I don't feel the language of the petition itself does a very good job at expressing concern over issues beyond the problems with initial diagnosis guidelines. It's too late to change anything now though and the important thing is to stick together if we're going to have any hope that we may make an inch of progress.
Oh, and for the record, if it weren't for my family, I'd be on disability myself... or even more likely, wasting away in a mental home. As you eluded to, not everyone is so fortunate.