Quote:
Originally Posted by Imahotep
It's so hard for non-sufferers to understand.
Really I don't understand what's going on half the time myself. The most insignificant tasks become mountains to climb yet we often look nearly normal. An awful lot of the doctors don't understand either. There was one gastroenterologist who asked me my pain level when he was examing me for a severe case of diverticulitis and was surprised when I told him my pain level was down and only 2 or 3. He said most people with this condition report much higher pain levels. I told him that I was talking about my hand and the diverticulitis was hardly noticeable unless he pushed on my abdomen. He suddenly understood.
It seems that the problems in our lives are wrapped up closely with the disease. I'm not sure which feeds off the other or if our lives just degrade with our health. I think all any of us really want is some understanding and that's the great strenght of groups like this. We may not always understand what we ourselves are experiencing but it seems easier to empathize when others describe their problems.
Scott Terrill has found his peace but the worst part is that I can understand the agony which brought him to this. It's not only a huge price he paid in his final moments but it is society's loss as well.
May he rest in peace.
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I am a non-sufferer but I love an causalgia sufferer. This disease scares the beejeebee's out of me. I once read that it is called the "suicide disease" because of the agony. I try my best to be supportive of my husband but don't always know what the right thing to do is. I read these posts, do lots of online research. I got him to agree to see a neurosurgeon next week but the other day he seemed to do an about face and started to tell me that he was not getting a spinal stimulator and has totally shut down. He won't read up on this disease and just tries to live his life as best he can. I seem to walk a fine line between trying to help him without being pushy because it is afterall his body and his pain. But it does affect our marriage and me in other ways. My mom died 6 weeks before my husband's surgery that caused the causalgia and then 6 months after that my sister was diagnosed with terminal lung cancer. She has since died. All of this has been a great emotional toll on me and I'm the only one working and carrying the family. It's hard on everyone. I know my pain is nothing like his physical pain and I truly support him 100% and never doubt his pain. This disease needs to be out in the public. People just don't know how physically, emotionally, financially, spiritually painful this disease is. It's a nightmare that never ends. I sincerely hope each and everyone of you become pain free.