Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 Tracie, I don't have any wonderful words of wisdom or comfort; others have beautifully expressed what I think. Just remember that you are not alone. I just made the decision today to take a leave of absence from work; I hate it, but I feel like I am on the brink of falling apart all the time. I am going to start with 30 days, then see how I'm doing. I will finish out this week, which is just two office days. Also, my niece was due to deliver 7/26, so I'm hoping she'll get the show on the road this week. That will be my last birth for awhile. I'm in the numb stage; just don't care about anything. Well, this sure was a cheery note! Love, hugs and tummy tickles if that helps, Rose Tracie Guys,I am really struggling right now. I don't ask for help often, but I feel like I'm at the end of my rope. I am so exhausted, discouraged. The neuropathy pain is unrelenting, I had to change my anti-inflammatory from Motrin to Lodine and my guts are not happy. So, I think I need to go back to the Motrin. It's also since this change that I feel like I'm getting hammered emotionally. As you know, I had to surrender the finances to and my sister, as my brain is too scrambled to do it anymore. Because of the financial shit, I also had to give up my therapy, so I'm not dealing with my issues around this fucking illness well at all. The loses I'm feeling are so overwhelming, and I know that they are real, and that I need to be kind to myself, I know that I need to wrap myself in my blanket and trust that all is going to be ok. But right now, I am just incredibly sad, feeling lost, feeling useless, feeling ugly physically and emotionally. I see my psychiatrist tomorrow morning and I don't want to go in. My insurance covers only 50% of his care, so it's a chunk out of pocket. I won't let him change my meds, I don't want to take anything else- or anything more-- as i'm feeling that the meds I'm on are fucking with my brain and to add more is not the answer. I'm not any more depressed-- that's not what this feels like. It feels like grief. How is it that when we get to that spot of thinking okay, now I'm on the path to feeling better, that the carpet is pulled out from under us, to remind us that we are still fighting a battle. A battle for our very life. I haven't done to much, I've followed my instructions to myself to pace myself, to eat right, to get a little exercise, to do something that I enjoy, to take care of me, and it's not enough. Why can't I have something that is fixable? I keep thinking and telling myself to stay in the moment, enjoy the beauty that is around me, but because of the meds in my system, it's like my brain has taken on a life of it's own. The fact that its still inside my skull means shit. I don't seem to have control over what my thoughts are doing. Exhaustion of spirit, exhaustion of soul, physical exhaustion, mental exhaustion, emotional exhaustion-- followed by total and complete overwhelm-- is wearing me out. So here I sit, telling myself to open my fist, and the burning ember of sarcoidosis won't burn so deeply, if only I can open my fist. I know that its not even my fist that I need to open, but to open my heart, to visit, to wonder, to watch that when I do so, the clenching, the pain of clenching to protect myself from the pain-- is so much bigger so much more intense, so much more totally self defeating, than if I can just gently open up (my heart) to the experience. Gently, slowly, opening up my heart and letting the intensity of the pain just be. Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2003 Report Share Posted October 10, 2003 Sweetie. So sorry to hear things are going so well. I do hope it turns out to be something quick and easy to fix and it isnt a flare. Please take care of yourself and try not to get too discouraged. Im thinking of you and hoping things get easier. Youre in my heart wishing you weller every day. {{{{{{{{{HUGS}}}}}}}} Shar Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.