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  • "At least it isn't cancer"

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    Old 06-14-2014, 03:53 PM   #1
    steven486
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    Angry "At least it isn't cancer"

    I had someone say this to me yesterday, and it made me want to scream! People act like Sarcoidosis is a "non-fatal" disease. Even when a person dies from Sarcoidosis they often attribute it to another illness, like one who had Sarcoidsis the news reported he died from Pnuemonia, another had Sarcoidosis and the media said he had a heart attack, what people don't realize is the sarcoid attacks any and ALL organs......sigh

    Last edited by Administrator; 06-16-2014 at 08:27 AM.

     
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    Old 06-14-2014, 04:30 PM   #2
    gmak
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    Re: "At least it isn't cancer"

    Hi, I understand your frustration because i have a condition that is considered rare but according to 2 neurosurgeons i saw they said it isnt rare at all its just unknown, unreported & most drs have never heard of it, adhesive arachnoiditis & its devastatingly painful to me. There is a sarcoidosis board here on healthboards that can be found under Immune & Auto Immune disorders category on Message Board list that can be accessed by clicking Message Boards in the blue rectangles at the very top of Healthboards blue heading. Unfortunately i know a lady personally that died from sarcoidosis after 20+ years after diagnosis. Im very sorry that you have received this diagnosis but like you signature says God is bigger! Arachnoiditis patients try to get the word out & im sure sarcoidosis patients do too & perhaps you could also, its a goal that
    needs us all! I hope that you feel better soon!

    Last edited by Administrator; 06-16-2014 at 08:28 AM.

     
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    Old 08-31-2014, 04:16 PM   #3
    Dizneyfan
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    Re: "At least it isn't cancer"

    Steven, I am brand new to this board and this is my first post. I was hit by your comment. They were positive I had Lymphoma and for 4 weeks I went under the assumption that is what I had as did everyone I knew. I resigned myself to the fact that is what I had and accepted it. Settled in so to speak with what happens next. I had a bone marrow biopsy and biopsy of enlarged Lymph nodes behind my pancreas. Came back and doctor said "No Cancer. Follow up with your GP." I was stunned. What? but you all said it was Cancer this whole time. It was like my brain did not understand. The nurse said...."Did you hear the doctor? He just told you you do not have Cancer. Why are you not smiling?" I wanted to slap her right then and there. I thought what do you know of everything I just went through? Get out of my room!!! Yes , I did not have cancer BUT what did I have then? Why am I still so sick with my 3rd hospital stay in 4 weeks? My GP later told me Sarcoidosis. And yes from then on everyone "At least it is not cancer." Now I am still feeling ill and sick and can barely function and everyone keeps saying that to me and I am like I KNOW IT IS NOT CANCER but I am sick with SARCOIDOSIS. What do you people not get??? It is almost like if you don't have cancer suck it up and get over it already. My whole point is I UNDERSTAND. PERIOD. Not I understand BUT..... I just understand and I am so sorry. Those words are like nails on the chalk board to me. I know people mean well but.....I understand!!! PEACE

     
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