Living with terminal sarcoidosis.

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I systematic sarcoidosis since around 1996. It is in every organ and was sent home to die in 2011. I refused to except that diagnosis and am still here today. That was my diagnosis from the Mayo clinic in Rochester Minnesota. I continue to keep a positive attitude and surround myself with laughter and other positive people. It is in every organ including my brain and am starting fail quickly. I now am in the hospital almost every month...if not from respitory failure to pancreatitis to kidney and liver failure. My feelings is to not take what the dr.s say to heart. They don't have a cure and it is still not known the best treatment for this disease. I don't about you but I am a fighter and have been on deaths door many times. I chose to retire on a very limited income close to a island and my mother whom I have never been close with and forgive and move on.

I am living my dream and am happier than I have ever been. !!!

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  • Posted

    Shondel , you have an amazing attitude and that is very likely keeping you alive. I am so sorry this disgusting disease has unleashed its fury so horribly on you. Sending positive thoughts your way that you remain in high spirits and do not suffer terribly. Hugs. ❤️
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  • Posted you have had sarcoidosis for 22 years ...your attitude is great/unbelievable ...if you are in pain do you take anything for that?...i have been taking ibuprofin and it seems to work some of the time ....nights are worse for me generally ...although i go through streaches where i sleep with not too many interruptions caused by pain
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  • Posted

    ...about 10 years ago a good friend of mine told me she had cancer and doctors told her she had a few months to live at most ..that was in person ...she stopped returning my phone calls ..i heard nothing from her and nothing about her ...saw her in a Giant food store about a month ago ...very much alive ....Donn
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