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Sarcoidosis Message Board

  • Frustrated!!!

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    Old 09-01-2014, 08:37 PM   #1
    Dizneyfan
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    Red face Frustrated!!!

    I am brand new to this board and this is my first post. 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. Those words are like nails on the chalk board to me. I know people mean well but.....SIGH.

     
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    Old 09-02-2014, 06:36 PM   #2
    QueenTitania
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    Re: Frustrated!!!

    I can feel for you. I've struggled with health issues for a long time. In fact, I had to quit working before I ever got my sarcoid diagnoses and start fighting for disability. I finally got the sarcoid diagnosis in 2012, and while it helps to have a name for it and realize that it's a valid, serious illness, my sarcoid is not under control and I keep having flares. I've seen lots of posts talking about the frustration when people make comments about "but you don't look sick" and I've dealt with that myself.

    You need to understand that sarcoid is one of the "invisible" diseases - most of the symptoms are not obvious at first glance. In addition, lots of people get it and get over it and move on with their lives without any major problems. In fact, they have determined that some people have it and never knew it - it only shows up after they die from something else or they receive a biopsy to check for something else; they never experience any symptoms.

    But some of us are massively affected, and 5% of those who get it, actually die from it. For some, it is a wonderful feeling to finally have a diagnosis of something "serious" - but most of the public don't recognize that sarcoid can be just as "bad" as cancer, ALS (which is very visible right now due to the ice bucket challenge), MS, lupus, etc., etc., etc.

    For me, a diagnosis of sarcoid validated that the feelings of pain, fatigue, and neuropathy were not "all in my head" as many doctors made me feel over the years. There is a valid reason behind how bad I am feeling - the sweating and the shaking and the exhaustion without being able to sleep. There is a reason why I am short of breath without the wheezing that is typical with asthma.

    HOWEVER, even with prednisone and all the other medications I take (over 20), there is no cure. I have periods of time when I am stable, when I only need oxygen at night, but I never feel "well." I am one of those for whom this is a chronic disease. It may not kill me, but it probably will make me miserable for the rest of my life.

    For years, cancer used to be a death sentence. It is common enough that nearly everyone knows someone who has died from it. I'm the first person I know with sarcoidosis. Even my mother who is a nurse had to look it up to find out about it.

    Recently, I've seen "sarkies" complain that we need to do more to make sarcoid as well known as ALS. No one is saying that they'd rather have ALS than sarcoid, but they are frustrated because it seems that everyone knows about ALS and right now tons of money is being donated to research a cure. Where is "our" ice bucket challenge? How much money is being donated to "our" cure? I'll lay odds that more money is donated to research a cure for cancer than ALS, even with all the recent attention.

    There is no way to compare serious diseases. I certainly don't want to receive a diagnosis of cancer, MS, or ALS, but I also don't want the diagnosis that I currently have. The reality is that research is driven by money and money is driven by the number of those affected. Pharmacy companies look at the number of people with a diagnosis and steer their research accordingly. Unfortunately, we just happened to draw the short stick when we were given our sarcoid diagnosis. It doesn't make us any better or worse than anyone with Lupus, AIDs, juvenile rheumatoid arthritis, or any number of alphabet diseases. It just means we are sick. Seriously sick. That should be enough for anyone.

     
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