Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Happy Birthday Shyrose I hope you have lots of family and friends around to celebrate and make the day great. Your Friendly Texan, Jeanna ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Hey Shyrose, I read your post with such empathy -- it is so hard when we want an definate answer and we get a "maybe." The frustration, the anger, the wanting this to "go away"-- we search for answers to questions that we don't even know to ask. We bargain with our MD's, our god, our higher powers, our families, friends, trying to make a deal to get better. But we don't know what "better" will be. As you said, the white spots might be degenerative, they may be plaques that won't do anything more than to leave you with the life you have right now. They may make it so that you don't know yourself, or your loved ones. We don't know-- no one knows. So we end up with more frustration, anger, sorrow, grief, fear. We are so much more than all those emotions. We are people with an illness that doesn't have alot of answers. We are the pioneers of neurosarcoidosis. The guinea pigs. And we will try anything to change this path. I've been sitting here over the last few weeks contemplating this issue. I can't and don't have the ability to change this path-- I don't know what will happen next to my physical body. The small part that we have some control over is how we think about this illness. Are we going to let it steal from us the joy of seeing the sun set at night. Are we going to let it steal the love we have for our partners. Are we going to let it take away the joy we feel when our kids do something that brings us pride or amazement at what they can accomplish. This is the stuff that makes up our Spirits, our Souls. No matter what this disease takes from us, it can't - unless we allow it-- steal our Spirit. I'm not gonna polish this up to be something that it isn't. The way we relate to our body, our families, our world will change because of this disease. That's when we really have to sit back and quiet our Self, and refocus on what we still have. With loving compassion, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Hey Shyrose, I read your post with such empathy -- it is so hard when we want an definate answer and we get a "maybe." The frustration, the anger, the wanting this to "go away"-- we search for answers to questions that we don't even know to ask. We bargain with our MD's, our god, our higher powers, our families, friends, trying to make a deal to get better. But we don't know what "better" will be. As you said, the white spots might be degenerative, they may be plaques that won't do anything more than to leave you with the life you have right now. They may make it so that you don't know yourself, or your loved ones. We don't know-- no one knows. So we end up with more frustration, anger, sorrow, grief, fear. We are so much more than all those emotions. We are people with an illness that doesn't have alot of answers. We are the pioneers of neurosarcoidosis. The guinea pigs. And we will try anything to change this path. I've been sitting here over the last few weeks contemplating this issue. I can't and don't have the ability to change this path-- I don't know what will happen next to my physical body. The small part that we have some control over is how we think about this illness. Are we going to let it steal from us the joy of seeing the sun set at night. Are we going to let it steal the love we have for our partners. Are we going to let it take away the joy we feel when our kids do something that brings us pride or amazement at what they can accomplish. This is the stuff that makes up our Spirits, our Souls. No matter what this disease takes from us, it can't - unless we allow it-- steal our Spirit. I'm not gonna polish this up to be something that it isn't. The way we relate to our body, our families, our world will change because of this disease. That's when we really have to sit back and quiet our Self, and refocus on what we still have. With loving compassion, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Tracie, Thats what I mean by ATTITUDE !!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 LOL! I so totally agree, and understand. Hugs, Tracie Quote Link to comment Share on other sites More sharing options...
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