Re: This message is a bummer; beware.

[Guest guest]

AMEN CONNIE!!! IF GOD BE FOR US WHO CAN BE AGAINST US????

LOVE TO ALL MY SARC BUDDIES~~~~BARB

To: Neurosarcoidosis Sent: Saturday, August 15, 2009 12:00:15 AMSubject: Re: This message is a bummer; beware.

Rose, I am so, so sorry you are going through this, it is so hard to remember or think back sometime. I think memory loss sometimes isn't so bad, at least then we wouldn't remember who we were, what we could do, and what we looked like before the monster.

As to others being worse off then you, I know you have compassion for people, and you want them to be better; but it doesn't have anything to do with the pain you are waking up with everyday, and the fatigue, and the next freaky thing your body throws at you. It's you living that and it's awful, for you. I am praying and crying as I write this, I just can't seem to find the words to say what my heart is screaming. I am praying.....hard.

I know the majority of us play the great pretender roles. Although I may believe that you have fooled people into believing that you are OK, I know good and well that you have never fooled anyone about the caring, compassionate person you are. (Baby-Catchers are a caring breed.) We are forced to pretend at times, for one thing, outside this group most people do not understand what is happening to us, and they run away from us if we say too much. It doesn't help that at times, we don't necessarily look as sick as we are. And I don't know about you, but if I quit laughing, I would never stop crying; and they really would run then.

Now I am really going to step over the line, I have never told anyone, but I also understand about the car thing. It just happens to be against my religion, and like you I just couldn't do it to the people I love, even though I believe I'm smart enough to get it done where they would never know. But I have to live by what I have taught my children since they were very small, "as long as you are breathing, things can get better", and no matter what, I know God is holding me; so I hang in. Please, Rose hang in, you are very loved not only by your family, but a bizarre group of sarc friends.

Be assured I will continue to pray, and thank you for always be so kind to me. You have helped me through more rough spots than you know with your compassion and your knowledge... ......... ......... connie

From: Rose <mamadogrose@ hotmail.com>Subject: This message is a bummer; beware.To: neurosarcoidosis@ yahoogroups. comDate: Thursday, August 13, 2009, 7:51 PM

Please don't read this is you are having difficulty dealing with the emotional issues of sarc/chronic illness. I don't have anyone else I can really share this with, so even if no one reads it, I'll feel better. The past few months I've been increasingly irritable. I feel like a volcano, simmering with an occasional blast of ash or lava, but knowing that a catastrophic eruption is coming, just don't know when. I thought I had done a good job of accepting all the crap the Sarc Monster had thrown at me--hearing loss, brain fog, fatigue, neuropathic pain, lung problems, eye problems, etc. But lately I find myself in a constant state of rage. I want my life back. I want to be able to take walks, to go camping, to catch babies, to read a book, to take a shower without having to drag a shower chair in there. I know that many of you are much worse off than I am; in fact, that millions of people on this

earth are not only worse off medically, but don't have the resources that I have. But I just don't seem to care. I hope this is a stage I'm going through, and not the real me. I feel like I have fooled people for years, pretending to be nice & caring & thoughtful, when I'm really totally selfish & self-centered. My cat got out last night & I screamed at him that I hoped a truck ran over him. My grandkids didn't know what to think. I meant it & I still haven't felt bad about saying it, although I suppose I should tell the kids I didn't mean it, but I'm tired of faking & pretending. I've increased the frequency of counselling visits, but underneath it all is this monstrous rage. So what to do? Go back to faking, which I'm very good at, and just try to keep the lid on the volcano as long as I can? Tell my psychiatrist that I may very well be homicidal & hope he

puts me in the hospital? Run my car into a tree & hope I don't wake up? I had these suicidal kind of thoughts a year or so ago, but I always felt that I couldn't do that to my kids & grandkids. Guess what? Now I don't care. There's an old song from the Guess Who called She's Come Undone; it keeps running thru my mind. I think I'm very close to coming undone. I'm sorry that I don't have any wise, funny or helpful comments for anybody. That person will be back if I can get the lid on the volcano. Those who pray, please do so. Right now I'm feeling disgusted for sounding so dramatic, but I believe I'm being honest. I hope so. Rose

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[Guest guest]

I really feel for you, because I know how it is! However, at some point, things will calm down. You have to rant and just get everything out, because at some point, soon or at a later time, things will be better than they are now, you have to flow with it even though it's rough.

Pomy

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 14 Aug 2009 21:25:41 -0700Subject: Re: This message is a bummer; beware.

amen tracie...connie

From: tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com>Subject: Re: This message is a bummer; beware.To: Neurosarcoidosis Date: Thursday, August 13, 2009, 9:15 PM

Rose,

Yep, it's a stage. Anger stage. Very Real. Very, very scary.

You are and always have been so strong and compentent and willing to take on not only your problems, our problems, your kids problems, your mom's problems, your nieces and nephews and grandkids problems. And you have to be exhausted. I don't know where you've found the strength all these years-- and you are running on empty.

I could have the anger party with you-- as can everyone else on the site. Yep, there are others worse off that we are. Yep, maybe we're being overdramatic. I personally don't think so. I think we do a disservice to ourself when we use "the grateful I've only got xxx" process on ourself. We have lost alot.

We did not choose to put our dreams and goals and careers on hold-- or give them up because we wanted to-- this isn't retirement after doing what we loved for many years. Our bodies have betrayed us-- and we're pissed.

Will driving into a tree change that, or is it going to literally add insult to injury. I think so. You could up end paralzyed and very much alive. All the generations your are care-taking would be devasted without you- and I include myself in that.

I know you don't want to hear that this will pass-- that if you look up, you'll see the sky. I know that you don't want that lecture on deep breathing, on graciousness, on loving yourself-- you want to be mad.

So be mad. YEP, BE MAD. MAD AT WHATEVER, WHOMEVER, WHEREEVER, THEN-- PULL UP THE BOOTSTRAPS AND GET ON WITH IT!

Damn, I hate it when I get permission to be mad-- takes the fun away from being mad-- so you can even be mad about that.

Just know that if you do something to physically harm yourself-- i"m coming through this computer screen and kicking your butt to Tuesday.

Love ya girlfriend,

Tracie

From: Rose <mamadogrose@ hotmail.com>To: neurosarcoidosis@ yahoogroups. comSent: Thursday, August 13, 2009 4:51:05 PMSubject: This message is a bummer; beware.

Please don't read this is you are having difficulty dealing with the emotional issues of sarc/chronic illness. I don't have anyone else I can really share this with, so even if no one reads it, I'll feel better. The past few months I've been increasingly irritable. I feel like a volcano, simmering with an occasional blast of ash or lava, but knowing that a catastrophic eruption is coming, just don't know when. I thought I had done a good job of accepting all the crap the Sarc Monster had thrown at me--hearing loss, brain fog, fatigue, neuropathic pain, lung problems, eye problems, etc. But lately I find myself in a constant state of rage. I want my life back. I want to be able to take walks, to go camping, to catch babies, to read a book, to take a shower without having to drag a shower chair in there. I know that many of you are much worse off than I am; in fact, that millions of people on this earth are not only worse off medically, but don't have the resources that I have. But I just don't seem to care. I hope this is a stage I'm going through, and not the real me. I feel like I have fooled people for years, pretending to be nice & caring & thoughtful, when I'm really totally selfish & self-centered. My cat got out last night & I screamed at him that I hoped a truck ran over him. My grandkids didn't know what to think. I meant it & I still haven't felt bad about saying it, although I suppose I should tell the kids I didn't mean it, but I'm tired of faking & pretending. I've increased the frequency of counselling visits, but underneath it all is this monstrous rage. So what to do? Go back to faking, which I'm very good at, and just try to keep the lid on the volcano as long as I can? Tell my psychiatrist that I may very well be homicidal & hope he puts me in the hospital? Run my car into a tree & hope I don't wake up? I had these suicidal kind of thoughts a year or so ago, but I always felt that I couldn't do that to my kids & grandkids. Guess what? Now I don't care. There's an old song from the Guess Who called She's Come Undone; it keeps running thru my mind. I think I'm very close to coming undone. I'm sorry that I don't have any wise, funny or helpful comments for anybody. That person will be back if I can get the lid on the volcano. Those who pray, please do so. Right now I'm feeling disgusted for sounding so dramatic, but I believe I'm being honest. I hope so. Rose

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