Re: ATTITUDES AFTER COMING CLOSE TO DEATH

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Darlene

I know how coming close to death has changed my attitude about almost everything! The first time was a house fire and after I was getting out and seeing trees were greener, the sky was bluer and it was almost like seeing things for the first time or maybe just appreciating everything so much more. Sarc takes so much away but what is let is more precious than I had ever seen it before. I cherish every day above ground, painfree or not.

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Subject: Re: Let's have a Roll Call! ATTN: TONYTo: Neurosarcoidosis Date: Wednesday, June 10, 2009, 8:18 PM

Hi Tony,Yes, Sarc DOES stink! I have the same problem with the hair........ ..I have always had a lot of hair and used to haveto have it thinned..... ......... ....but the Sarc took a lot of it away and, like you, my hair gets really thin and then it comes infor awhile and looks good and then it gets thin again. But that is the way Sarc does me.....I do ok for a few days and thenit acts up in my stomach or bowels or I will just hurt all over (bones and muscles) or have severe headaches or backaches... ..you get the picture....I never know when or where it will hit me next. It is terribly frustrating, I know. Just be thankfulthat we are still here. After my illness in 2006, I have learned to appreciate each day more and more. I came so closeto death that it was a miracle I survived and I appreciate each and every day.I know it is hard and I wish I could help each of our nearly 600

members -- but I am not a Doctor or Nurse, so Ican only help by being here and sharing what I can. Just know that Tracie and I, and all of our wonderful Moderatorsare here for each of you and will help all we can.Sending lots of hugs,DarleneNS Co-Owner/Moderator Re: Let's have a Roll Call!!!> Hi Darlene and to all my friends out there! Haven't posted

in quite a > while. Just trying to sort things out. A few of you might recall that > all my hair fell out last year. Well, it finally started to fill back in > around March and was really thick by May. Here comes June and there goes > my hair again. Small spots at first, now it appears to be thinning in > many places.>> Like everyone else, sarc throws me a curve ball here and there. Finally > found a doc that listened AND was willing to work with me. Got a letter > in the mail that he packed up and left to take a job on the west coast. > I've been assigned a nurse practitioner (NP) for my next visit. Nothing > personal against the NP, heck most I worked during my years in healthcare > were very good, but think it's time to start the search for another > specialist.. .that should be fun.>> Other than that, went from running 25+ miles a week with runs

as long as 8 > miles, to getting winded walking up the stairs. Having balance issues > again also and fell so hard on the staircase this weekend that I thought I > broke my foot. Still really sore. Did I mention having sarc stinks?>> Still working but not sure what's holding me up or keeping me going. I'm > wiped out by the time I get done with work and do a few small chores > around the house (like dishes from the night before). Getting out of the > rack to do it all all today was tough even with 13 plus hours of rest > yesterday. Sorry to rant on...>> Hope this finds everyone well with summer just around the corner.>> Peace, Tony