Well, I first would like to say hello and I think I have finally figured out how to reply to someone on this "NeuroTalk" site just now... You can check out my profile (which I still need to type up my bios, etc.)
Long, long story I suppose. As I'm sure everyone else's is in here as well. Listen, I will be the first to admit I will never claim to know what ANYONE else is feeling but myself, ever. Just to clear that one first, how could I do that possibly? We we're all made unique, one of a kinds, each with their own DNA strand, their own mind and thoughts, dreams, actions, choices, and much else. So, when we say no one understands us, what we're really saying is most definetly the truth! As it is for everyone who lives.
As for you being a burden to your family, friends, or yourself (just incase that thought has even crossed your mind once or twice), you could'nt be more off the target kiddo! See, in cases like us (RSD-or whatever other ugly disease likes to flex its muscles and show itself) what was only intended for bad, is now actually gradually being used to generate good in this crazy world believe it or not! Kind of like the good samaritian in the Bible story. An injured person left laying unattended to in the road actually got to watch more than one "Good Person" (self proclaimed) pass right on by them not to even lift a finger to help! It was'nt until the Samaritian stopped and assisted which if you read the story (the injured, Samaritian, and city they were in) did not allow the two of these type of folk associate with one another... Anyways, not even batting an eye at this thought, the Samaritian naturally gave of himself to help out another in need which only seemed like the natural thing to do in his heart at the time...
So see, its real easy for all of us to hang out with the healthy, rich, beautiful, powerful, or even intellegent of the world. But, when one of them or us gets hit with a suprise attack of disease, bankruptcy, old age, stripped of our physical independancy, or even memories-concentration-etc. Well, then, where did everyone go? Where's the party man. Is it just me or has Elvis left the building? (I just thought that one might sound funny).
Truth is, we all soon find out in trials and tribulation who and just what LOVE really is don't we? Love is an "Action" word. And we our selves can also keep putting it to work every day of our lives just by doing this very thing here. Or helping your neighbor who also is sick (who better to understand them but one of us?) You can't take someone through something you have'nt already been through yourself!
So you my friend... Priceless. Not only in your families eyes and friends, but in The One who created you.
It seems there are alot of knowledgeable people in this community, and I will thank God for that! Keep up with your awareness of "RSD". We don't need to fear it, but keep learning from it, and communicate in detail with all our doctors as much as possible every visit. Document your symptoms, bring it with you. They will copy them and add to file. Then bring the same ones to your other specialists and they will do the same. We have only ourselves to blame if these docs keep continually scratching their heads. They can only go by what we tell them. Make them listen. No one is exempt from this disease. Even our doctors could get it. So remember, there just man also searching for an answer to yet another mystery waiting to be solved.
I have a theory. They can do all the lab work and testing they want, but if the lab rat does'nt speak to them not muck will result in the end...
God Bless,
PS. I've talked to much since birth!
Traci