Quality of life........

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Posted by Bennie Sue ( on December 16, 2000 at 20:17:18:

In Reply to: Trash me ........... good .......... posted by Stew on December 16, 2000 at 15:23:04:

This seems to me to be a question of "quality of life."
There is no cure for CH.
Some people almost never have a day free of pain.
Some are lucky and only have episodes for several weeks.
Some gain a little control over their pain through medication; some do not.

I fear you are feeling distressed at the advice we offer because it does not work well for you.
You sound very bitter about the situation and seem to have little hope. That makes me feel very bad for you.

People usually take medication that is prescribed for them if they have diabetes, heart
disease, or cancer. The medications may not cure the disease - but they might allow the person to have a better life - to work, to care for family, to play. Even a few moments can mean so much to us and to our families. Even lowering a 10 to a 5 makes a world of difference in what we can accomplish.

If I must change medications every year, I will; if I try one that does not work at all, I will look for something else; if I find a new combination that is more effective, I would be untrue to myself if I did not give it a chance. There are others who are affected by the way I feel. I cannot afford to be a martyr to pain.

Do not be too discouraged. Scientists are working to find a cure. Help us spread the word about CH so that more work will be done to help us. Contribute some of your time toward easing the burden of the chronic sufferers. And I hope you feel better soon.

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