Nuther update

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Posted by katrina ( on May 09, 2001 at 11:49:23:

Well, as some of you said, anesthesia seemed to give a short repreive to the cycle of clusters, but they are back stronger than ever! There were two times yesterday when they lasted almost 2 hours, and this is unusual. Has no abortive to use but injections of demerol, but it seems it is never a good time to use that. Seems like hubby has to be having those major ones continually to be physically ready for the demoral.
Sometimes I wonder if it took any of you as long as it is him to realize there are just certian things you can not do without running the likely risk of the beast bashing you.
Then I wonder too if there is any approach that would be more appreciated coming from the wife other than the typical "if you put your tongue in the light socket you will get shocked, so do not do it."
I am just the supporter who does not feel the pain you suffer's do, but the pain that I do feel is not easy sometimes either.
I understand that there is alot of life all of you folks miss out on due to the fear of the beast, but those of you who have spoke of your determination to not be robbed of as near a normal life that you can obtain, what is your secret and how did you reach your outlook?
The embarassment my husband feels when we are among friends that have known and watched him go through this for many years, outweighs his ability to remain social without a crutch.
There are very few places he will go, local pub and medical appointments sums it up.
Any insight from anyone would be appreciated.
Then, to you supporters, how do you stay sane? Some days I think I got it all together and other days I KNOW I don't. I am in this for life, and coping is not always easy. On the outside I am as strong as the rock of gibralter, but inside I am crumbling.
I am sure these are not feelings that no one else has had, but if you have any ideas I sure would like to hear them.
Thanks for listening

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