Re: Stages of grief

[Guest guest]

I too found this letter very reassuring and comforting. I was experiencing grief and severe depression and I just thought that I was over reacting to the entire situation. I sometimes cannot grasp the fact that I had brain surgery and I have a shunt in my head. I had never never been sick like this before. Always a healthy spry energetic person. Now I feel like crap, vision is compromised, in pain, and fat from the prednisone. Your letter was very important to me. I find myself reading it several times. You all understand me and know how I feel. Thanks Attached is a pic of me. Both pics are after the surgery. I had hair down my back but had to cut it all off and where a scarf for a while.

To: neurosarcoidosis Sent: Sat, December 4, 2010 10:57:10 PMSubject: Stages of grief

, that is a beautiful letter. I especially like the part about people being patient & understanding that there will be cycles of grief. Thank you for sharing such a personal story. I know that I have the sign-off phrase somewhere; I'll have to find it.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: rkelty99@...Date: Sat, 4 Dec 2010 04:32:46 -0800Subject: Re: comic strip

I used to have the screen name "patience" because I was so patient and optimistic about everything. I managed to keep that up for six year until I had that megascary bad time of sepsis while on cytoxnan which I was taking to keep me from dying in a particularly horrible attack of neurosarcoidosis. I had to learn how to try to hold onto my dignity while I was an enormous blob sitting on the portable pot waiting for some passing nurse or orderly (usually men) to take me to my bed since I couldn't manage by myself. I couldn't communicate because the sepsis had turned my brain to mush from the infection. I had one arm in a cast because they had to reconstruct my left elbow(with a splint) where the staph originated in a tiny scratch on my elbow. I couldn't even drag myself into bed or push my own wheelchair.I've been pretty bitter about the whole disease after

that. I lost most of my friends because they'd take a quick look at my bloated moon faced feeble self and run for the winds. After that, I developed my bad habit of trying to sleep the pain away.Now, I am trying hard to regain my old sense of hope and optimism. I am looking so much better -- still fat (170) but a far cry from the mid 200s. I am more articulate, even though I have trouble with word retrieval. I am still not driving very fat, but on my good days I am trying to get out to do something. If it's not a lunch with friends, then it is a labored walk though the park. I may not always walk so well, but I am very, very happy to be out of bed and out of the wheel chair.What you need is people to be patient with you. You need to go through the stages of grief just as if someone had died, because someone has: the old you. And what makes it more difficult is you will get her back from time to time,

only to have her die and die all over again. But, believe me, those stages get easier and easier to cope with, especially if you hang onto the memories of what it was like to better and hold onto the idea that you will be better again, with patience and prayer (sorry if that religious reference was offensive -- just telling you my experiences.)Yes, there will people who won't understand or who will get sick of hearing about your illness and how you feel. You will even lose them for awhile. Be patient with them, too. They also need a period of adjustment, and those who don't adjust and come back to being close to you aren't worth your patience anyway.Hope some of this was useful to you. What didn't help you, please discard. I, too, need to vent from time to time, and since I have stopped sharing how I feel with all but a very select few, it really helps to have a place where you know you won't be judges

for letting off a little steam.We used to have a saying from a small group of us who called themselves the "Bootstraps Fairies." We were just a group a folks who tried, always to be positive and help others be cheered up.I can't remember our sign off, which I had some hand in making up. If someone else remembers it (Rose!) would you share it here? I'd like to add it too my sign off again.Take care,

To: Neurosarcoidosis Sent: Sat, December 4, 2010 12:05:53 AMSubject: Re: comic strip

I agree. I am usually positive as well. But I have gotten so sick of hearing the same things as well. They are not going through what we go through. I get tired of everyone trying to down play my disease and my situation.

To: neurosarcoidosis Sent: Fri, December 3, 2010 10:20:58 PMSubject: RE: comic strip , I LOVED this comic! I'm a positive person by nature, but there are times that you want to cram somebody's head in the toilet when they start encouraging you to see the bright side, the silver lining, the rainbow after the storm, blah, blah, blah! And I'm often the one doing it myself!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Fri, 3 Dec 2010 17:19:08 +1100> Subject: XKCD> > This is a brilliant comic : http://xkcd.com/828/ I just thought you all would relate to it too ... > > The research shows that, while 'positive thinking' can help you be pro-active with managing your disease and seeking treatment, and can help you cope emotionally a bit better, it doesn't actually affect your HEALTH at all (ie positive thinking doesn't help cure anything, or improve symptoms).> > Cheers,> > > > (Apologies if this gets posted twice, but it didn't show up the first time I tried ...) > > >

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