Fw: Digest Number 3437

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----- Forwarded Message ----To: No Reply <notify-dg-Neurosarcoidosis >Sent: Wednesday, March 14, 2007 7:21:58 AMSubject: Re: Digest Number 3437

Hi , the spoon story was great and touching! I might use your example next time it arises? I to felt that family and friends should have an explanation? Throughout the holidays this year all I heard was that you look so good? I had just read one of Gilbert Barr's books on living with sarcoidosis and other chronic illnesses. One of the chapters is titled you don't look sick, and as I read I realized that not enough family and friends knew how I struggled each day? So I wrote a very nice letter explaining what I felt was important! It was the best thing I could have done, especially for myself. It just felt good and than the responses and understanding and questions began an altought some have not quite understood everyone is thankful for the information. Now when I decline a invitation it's understood that in your words my spoons were used up shortly after showering. So than you

for the great letter and spoon analogy I will definitely use your example. Thanks Anne

MATT in Seattle>> >> Hi it has been a while

so i thought I should check in- My computer > was down for a while> and i just now got it working again. My mom and i are finally going > on our trip to Cal. We> leave next tuesday and will be in SF for three days then go on to > Sacramento.. If anyone is> in those two cities and would like to meet i would enjoy that. My > health has been so-so-> still lots of problems with my teeth, had to get 2 more pulled and > then afterwards> devoloped an infection in my mouth. They still cant get rid of my > headaches but that hasnt> been to bad, I also have all of the same aches and pains in my knees > and elbows. it has> gotten to the point were I can barly hold a glass in my hand. I am > tinking about going back> to denver in the fall to Nat Jewish as i am not feeling totally > confident on my are in Seattle.> Not much else new in my life. Seattle area has

had a lot of bad > weather this winter so will> be glad when its over. Anyway if anyone is interested in meeting and > lives in San Fran or> Sacramento please let me know if u would like to meet-Hopwe all is > well with everyone> else and i look forward to reconecting with you MATT>>> >

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